PH Awareness Week 2018 - 22nd - 28th October Plus... Benefits - PHA UK
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AUTUMN 2018
The magazine for supporters of PHA UK www.phauk.org
E N EE D TO
W BO U T
TALK A
LM O N A R Y
PU T EN SION
HYP ER
PH Awareness
Week 2018
22nd - 28th
October
Plus...
Benefits 70 years Preparing for Pet Yoga…and
advice of the NHS ‘flu season power much more!
30th%
ing sale
s
of all clo ds the
r
go towa ritable
’s cha
PHA UK ties
activi Latest Living Regular
the fla g for PH News... with PH... Features...
Fly n e of
awaren e ss in o 11 PH Awareness
Week is coming
15 The importance of
sharing information
06 Emphasis
Exchange
H A U K to p s
Join in the PHA UK member Ronnie News, views
our new P
conversation offers his advice and your letters
between 22nd – 28th October
19 New information guide 16 Puppy power 25 In The News
Choose from t-shirts,
for people with PH How a small dog Yasmin’s tale of
Our flagship named Murray discrimination
polo shirts, sweatshirts
publication changed owner makes national
gets a makeover Sally’s life headlines
and hoodies, for adults
Info
A com rma
tion Adv
under prehen Suppor ice
stand sive gui t
ing Help
pulm de to
ona
ry hyp Con
tacts
ertens
ion
and children in a 24 The fight 21 Yoga for the mind, 28 Green Leaf Crew
goes on body and breath Meet 12-year-old
range of colours.
England A closer look at how it can help Bex Bennett
denied
Selexipag
in current
postcode
lottery
30 Fundraising
Roundup
Your fundraising
activities across
the UK
33 Physiotherapy 36 Not all heroes 38 The interview
and PH wear capes Natalie Doughty of
The study results Steve’s life as a Papworth NHS Trust
that prove its volunteer after his
importance CTEPH operation
Breathle
talk
We need to onary not voicess,
41 PHinding your hope 44 Celebrating 70 years about pulm .
hypertensi
on 22nd-28th
less.
October
Our visit to the We look back on seven
#LetsTal
kPH
#PHWeek18 #PHWeek
We need
#LetsTalkPH 18
October
22nd-28th
international decades of NHS care
Not all s talk abouto
organ do t
PH conference
disabilitie .
Order online
nation.
in America
are visible #PHWeek18
22nd-28th
October
#LetsTal
kPH #PHWeek
18
#LetsTalkPH
October
22nd-28th
hop With this issue of Emphasis:
www.phauk.org/s This magazine is printed on paper
FREE PH Awareness Week
50
or call 01709 7614
'SELFIE CARDS'.
from sustainably managed sources
See page 13 for details
Support people living
with PH from just
£1 a week! tea&t
We rely on regular donations to help us continue our
Welcome alk A B OU
T PH
work to support people affected by PH. By playing the
PHA UK Lottery, you can contribute a little money Welcome to the autumn 2018 issue of Emphasis.
O
N UP T
WI
0 0
We’re busy gearing up for our third annual
0
on a regular basis – and you might even win!
• Choose to play as many times you like. 5 ,
£2ERY SATURDAY
PH Awareness Week, and this edition tells you all you
need to know about getting involved. It’s so important
• Cancel when you want. EV ELP TH E
E that we talk about pulmonary hypertension, and this
A N D H H
• No need to claim – if you win you’ll H A U K AT T year’s campaign is all about having conversations
P TIME
automatically be sent a cheque. SA ME – with family, friends, colleagues and the media.
22-28 October
S ometimes it can be as simple
as sitting down with a hot
by all the fundraising efforts of our
wonderful PH community and for that
drink together, which is why we’re
promoting ‘Tea & Talk’ events for PH
we want to say a huge, huge thank you.
Finally, do take a look at our update
“It’s so important
Week 2018. Find out more about them, about access to Selexipag on page 24. that we talk
and other ways to help put PH under English patients are getting left out in
the spotlight, on page 11. the cold and we’re determined to get fair about pulmonary
hypertension”
This issue is also full of features to help access to drug therapy for everyone.
you live a better life with PH. Read We hope you all join us to encourage
about the difference a cockapoo named conversations about pulmonary
Murray made to PHA UK member Sally hypertension during our special
on page 16, and find out how yoga week at the end of October.
can help both your mind and body on
page 21. You’ll find financial advice for
carers on page 35 and we’re pleased
to bring you a special interview with
Papworth volunteer Steve Stickler on Iain Armstrong
page 36. Not all heroes wear capes, Chair of PHA UK
and it’s important we celebrate those editor@phauk.org
selfless people who give their time to
help others.
SIGN UP TODAY!
Talking of special people, we’ve been
blown away over the last few months
Visit www.phauk.org and
search ‘Lottery’ or call 01709 761450
The PHA UK Lottery is operated by Unity Lottery. 50p of every £1 goes directly to the PHA UK with the rest covering
prize winnings and administration costs. To contact Unity Lottery call 0870 050 9240. Unity is operated by Sterling
Management Centre Ltd, registered as an External Lottery Manager by the Gambling Commission under the
Gambling Act 2005 - www.gamblingcommission.gov.uk PHA UK Registered Charity No. 1120756
AUTUMN 2018 emphasis 5
Emphasis exchange
Remembering
Kirsty
Naomi Dean ce
lebrated what
been the 35th would have
birthday of her
with an af tern sister Kirsty
oon tea in her
m emory. The Social Media Round-u
event, organis
£1000 for the
ed by the family
, raised over p
If you have any news and views to share via the Emphasis exchange well that gues
PHA UK and w
en t down so Top tweets and popula
r posts
ts suggested it from PHA UK's Facebo
please e-mail editor@phauk.org and don’t forget to keep in touch via yearly occurren
ce.
becomes a
ok and
Twitter pages
Facebook and Twitter too. In a special blo
g post that Nao
mi wrote
to mark her sist
er’s birthday, sh
“Throughout th e said:
e ten years Kir
with this disea st y lived
se she lived life
She laughed o
ften, she went
to the full. Catherine Makin
got married, fe tr avelling, Nothing better than sit
ll in love with b ting in the
is
Dear Emphas
much more. Ev aking and so warm evening sunshin
ery day she was e with the
ve in pain but summer edition of Emph
for PHA UK and ha
she didn’t com asis.
ev en ts plain much; Kir
n d ra isin g positive lady an sty was one
organising fu @JuliaPHNurse
I’ve been very busy
d I admire her
deeply.”
raised £754.53. se in F eb ru a ry 20 17 my sister Vicki Great QI work here at Fre
eman Hospital
u
this charity is beca hospital they diagnosed her with to reduce our wait tim
The reason I chose s in
e for new patients
ital. Whilst she wa
referred to PH ser vice.
s ta ke n in to ho sp en sion a n d a ll of us are dealing 19% of patients within
We were only seeing
w a rt
nd pulmonary hype
30 days, now 88 %
le in he r he a rt a with some hard work fro
m team.
a ho t
with every day as
it comes.
th e PH A U K , w ho have done brillian @wginsing
r in contact with ted by PH, and
The hospital put he ents and life quality for those affec she
Finally able to write a
work improving tr
eatm
b ee n se n d in g her help her know prescription for Selexipa
g
E m ph asis m a ga zines they ha ve
a zi n g w it h dea ling with what – frustrating that at pre
sent
the m
s been absolutely a tion to me!
this can only be for patie
nts
lo n e. M y sist er ha in Wales and post TR AC
isn’t a n d is a huge inspira E
she’s been diagnos ed w it h a
g a n a ft er n oo n tea and cake study. Meanwhile patie
nts
in
fundraising, includ
in England are still fighti
many lollies ng for NHSE approval.
I have done lots of m b ol a , ‘g u es s ho w
t in Ju n e w hi ch included a raffle, to le. During the event I also Kelly Stanley
even sa
th e ja r’ ga m e and a sweetie cone a s a success. The event My lovely brother Mark
are in op w hich w is doing a
-minute hula ho or
We’re uepr faward !
d the village of
50k in 12hrs Peak Distric
did a sponsored 30 ro u n t Challenge
op le fr om a to raise money for Pulm
l with around 40 pe
anoth
onary
went incredibly wel Hypertension Associatio
n UK!
go ld sb y sh ow in g their support. go ld sb y Rainbow Unit for
five
a s e d that the r
epor t Please read his story an
d support
In th e 1st In We’re rea
lly p le
g with him if you can. X
ult leader for hooping with PHA
UK our Livin
I have been an ad ev en in g of hu la
into the fi
nd in g s o f
sted in
June we did an was a success! en shor tli @StefanieNimoy
years and later in n d ra isin g ev en t PH sur ve y h a s b e
ategor y a
t the
ty. The fu t io n ’ c
as the chosen chari ubli c a Pets are good for the sou
the ‘best p s t itute of Pu
blic l of PHighters!
te r e d In
2018 Char P ride Awar
ds.
(C IP R )
Relations unced in
Stacie Eldred n e r w il l be anno
one
The win k y ou to ever y
r. T h a n
Novembe oices
ed their v
who shar ave
e repor t h
to help th In August, PHA UK mem
ber
pact. est curator of the
such an im Tess Jewson was the gu
giving her the
@NHS Twitter account,
areness of PH
opportunity to raise aw
audience.
amongst a huge online
a great job Tess !
Thanks for doing such
AUTUMN 2018 emphasis 6 AUTUMN 2018 emphasis 7
Emphasis exchange
D e ar Emp h
My husb
wedding
and Rich
as is ,
and I he
Conference is back!
anniver ld a join
sar y pa t 40th b
lived wi r ty this ir thday SAVE THE DATE:
th PH sin summer and ten The PHA UK Conf
prognos c e 2007, an . Given t th erence returns to
is when d w as s o hat I ha Hotel in Oxfordshi Heythrop Park
re on 4th – 6th M
Me and my dad these sig
nificant
initially
diagnos
e d ,
ill with
I wasn’t
such a p
o o r
ve
This celebratory
event will include
ay (Ban k Holiday Weekend)
2019.
medical mileston expecte keynote speakers, ex intera ctive educationa
team an es. How d to ma pert talks, and th l sessions, specia
d a e v e r , th a ke with other PH A UK e chance to meet l
own det vast arr nks to m members. and share experie
erminat ay of dr y w o n d This is a great op
nces
so decid ion to li ugs - an er ful portunity to join
ed to rec ve my li d in fair celebrations, whi us as we begin ou
ognise t f e to the full n e s s m y ch will conclude r 20th anniversar
y
celebrat - we ma Great Ormond St with a weekend
or y nigh hese ver d reet Children’s Ho for children unde
t with o y s p e cial occa e i t ; and provided at the 20 spital in 2020. Ac r the care of
tivities for childre
ur dear sions wi 19 conference, bu n will be
be limited, but w t on a reduced sc
We had family a th a e hope to see as m ale. As always, pl
a truly w nd f r i e n accepting expres an y members there as ac es will
the ver y onder fu ds . sions of interest
at the moment, bu possible. We’re no
small ho l night, much notice as po t we wanted to gi t
urs, and d a n cing an our social media
ssible – so please
pop the date in yo ve you as
memori came aw d chattin channels. ur diar y and keep
es to ad a y g into an eye on
the year d to tho s e w e w it h many w
s. T hat s have alr onder fu
was inc aid, I ce eady co l
redibly r tainly f llected o
fatigued elt it in the d ve r
We deci and ach ays af te
ded not y f ro r and
kindly s to a s k for any m all the cele
eek don gi f ts or pr b ra tions.
husban ations in esents, b
medical staff
d Rich g suppor t u t r
raise fu ave a ve
r y movin
of the P
H A UK.
M
a ther to
Education d ay help s
r ther aw y
learn more about PH
areness g speech w onder fu
in which and exp about th l
PH cont e i
With my delighte inues to la in s o me of th
ll ne s s - to
husband Rich impact e many aging the
d to say
that we and lim
it my da w a y s sa w us ho ld th e lat es t in our series of ‘Man
raised a ily life. I July urce centre
With ve
r y b est
wonder
ful £ 800 am th les s Pa tie nt ’ ed uc ation days at our reso
w i she s , in total. Brea l staff learn
A ndrea Bow ef fie ld . De sig ne d to help frontline medica
in Sh specialists,
n (nee Mur PH , sp ea ke rs included clinical nurse
phy) x mor e ab ou t
pist, consultant pharm
acist and
ec ia lis t ph ys iot he ra
a sp attended
ni or re sp ira tory ph ys iologist. All those who
a se resources.
nt aw ay w ith an in formation pack full of
we
e@phauk.org
With my little brother For details on future ed
ucation days, email offic
l icat io n s hines
New pub ur charity
o
light on y lp people
learn mor
e
to he r free.
blication to order fo
ising
p u a b le
a
w il
r
e v a
d
n now a
n
A
rs and fu PHA UK is ins inform
ation
Fifty yea
about the k le t c on ta rk
page boo reas of wo
The Pu
The eight-
lmona , a
Associ ry Hyp
obje c t iv e s
en
rked their gold aims and
ation ertens
a bers.
about our
ion
The on (PHA UK)
rch ie Clephane m ly il a b le to mem r vices, sa
id :
A y for 34 family
n d av a e
Mau re en a
n er pa rt dedica charity in th and the su p p o r t
of memb e r sh ip s
were
a din ted to , director
ersary with , and instead o
f suppor e UK ut felt we
wedding anniv those a C la y to n so u rc es b
Lin co lnsh ire ffected ting Shaun useful re what
close friends in ad. by PH. a lo t of really e charity and
members and e PHA UK inste “We ha v e e to th
th ive guid popular
d o na te to mprehens y proving
d guests to for thinking of
ing a c o a lre a d
gifts, they aske mis s lication is
n d th a nk yo u r. The pub people.”
s to you both a w e sta n d fo
ith e ven more
Congratulation
it w
pe to share uk.org
The PH
and we ho www.pha
A
comm UK are grea
cial day! at
un t
us on your spe
it’s com icators and
y for free
forting
cop
they a
re alwa to know
ou r
# brea
Order y
th
Gillian ys ther
e. notvoi less # brea
celess th
notvoi less
celess
4,000 +
AUTUMN 2018 emphasis 8 AUTUMN 2018 emphasis 9
UK-base
www.p d members
hauk.o
rg
AppReview
Would you like to review
an app or book which
may be of interest to
H E
Emphasis readers?
T
Please contact
This issue, we review two apps designed to help you
editor@phauk.org
JOIN ATIO N
improve your health and fitness via your phone.
ONVRS
E
C U S
HELP
Yoga Studio: Mind & Body
How often do we hear that there’s an
app for that? When it comes to hea
lth and fitness there
ANDE AN P
IA
MC T !
MAK
are lots of apps on the market and yog
a has a few. Yoga Studio is one of the
available by subscription (£2.79 per wee most popular ones,
k) on both Apple and android devices.
such as reducing stress, are discussed
in this issue of Emphasis and you mig
The benefits of yoga,
22-28 Oc
to b e r
out a local class. Beginners are advised ht be prompted to try
to learn techniques correctly from a
Yoga Studio would be helpful for prac qua lified teacher, but
tice as you progress. It caters well for
photographs of poses (you might hav newbies, showing clear
e heard of ‘Downward Dog’, but ‘One
along with detailed information. You Legged King Pigeon’?!)
can familiarise yourself with them and
own time; of course, taking great care try them out in your
. You can then download ‘class’ vide
commentary or create your own. You os with relaxed teacher
have lots of freedom to choose the focu
required as you improve, with new s, dura tion and ability
material being added all the time. I
meditation videos too which proved tried a couple of the
useful in the run-up to moving house!
as simple or as complicated as you wan Yoga Studio is
t it to be. Even better, you can try it
for free.
Reviewed by Deb Wain
MARKS OUT OF 5?
4
MyFitnessPal or ga in w eigh t,
g and exercise
this calorie countin ily calorie and
u lose, maintain, orked out your da
Designed to help yo free, and ef fective. Once you’ve w step counters
tracking app is sim
ple,
k an d fitne ss ac tivity (it syncs with holds data on
k each meal, snac ur hand. The app
nutrition goal, trac a daily motivator in the palm of yo will work out the nutrients.
ve it
too), and you’ll ha s so you can type in the brand and e calories yourself. An added
illio n fo od lly en ter th
over two m e barcode, or man
ua g you to
so sim ply scan th ila r w ay to Facebook, enablin ep you
You can al ed in a sim d to ke
itnessPal can be us ne
scussions – all desig it can also be
bonus is that MyF pa rt in fo ru m di
dates and take android devices,
add friends, post up being available for both Apple and nutrition and exercise goals
l as ur
motivated. As wel mputer, so you can keep track of yo u ha ven’t used it for a
while,
de sk to p co in de rs if yo
used on a regular rem do need to
on the move. With t you put in your mouth - but you
at work, home or coun table for w ha , it ca n feel like a bit of
a chore.
ep s yo u ac at , at tim es ns,
the app ke ur lo gging and I admit
th
er e have been imitatio
m itt ed to yo al th ou gh th
keep com while, and
been around for a app if you want
MyFitnessPal has ains the most simple and effective
m
in my opinion it re alth goals.
help to reac h
Reviewed by Mar
yo ur he
y Ferguson MARKS OUT OF 5? 5
u c a n g e t invo lve d >>>
Find out how yo
AUTUMN 2018 emphasis 10 AUTUMN 2018 emphasis 11
22nd-28
OCTOBEtRh
talk
We need to onary
PH Awareness Week is on organ donation, highlighting the Get social about pulm n.
hypertensi
o
#LetsTalk
PH #PHWeek1
8
returning for 2018 and importance of talking about your wishes 22nd-28th
October
we need your help to make our with your family. And there will be a few Social media allows us to reach a huge ll
ot asnapping
NGet
third annual campaign the biggest and surprises to look out for too! audience, so much of this year’s PH ilities
isabthis
dWith
best yet. This year we’ve got a strong focus Below are just some of the ways you can get Awareness Week will focus around
afour le. of Emphasis, we sent you
isibissue
re v‘SELFIE
on encouraging conversations about PH, involved with PH Awareness Week 2018. CARDS’ to help you get your
activity on Facebook and Twitter.
8
PH #PHWeek1
#LetsTalk
October
helping more people understand what it’s You’ll find more ideas and plenty of message across in a photo.
22nd-28th
Download your own PH Awareness Week
like to live with the condition. We’ll also resources online at www.phauk.org Either take a selfie, or ask someone to
profile and cover images for Facebook
snap it for you, and get sharing on your
be putting a special weekend spotlight and Twitter from www.phauk.org, and
social channels using #LetsTalkPH and
join the conversation using the hashtags
N
#PHWeek18. We’ll print the best in the
EW
#LetsTalkPH and #PHWeek18
winter issue of Emphasis!
Follow @PHA_UK on Twitter and
Host a ‘Tea & Talk’ event
If you didn’t receive the selfie cards,
@PULHAUK on Facebook to
F O R 20 or need some more, you can download
18 ! share our posts during the
week (we’ve got lots of Join u them for free at www.phauk.org
Twitter s on
1
exciting content planned!). on Frida 2-1pm To help us make an impact, save your
We all love a cuppa and a chat, so this is October
y 26th
the perfect excuse to get family, friends or Don’t forget to tag us in special for a snaps until PH Week 22-28 October!
T
chat an witter
colleagues together to understand more on your own posts too. of
d be par
t
‘the big
convers PH
about pulmonary hypertension. Why not ation’
introduce some sweet treats and incorporate
a bake sale too? Share your PH
tea&
Our free event pack includes everything you Talk about story with the media
need to make the most of your Tea & Talk organ donation
talk
event – including quiz sheets to help people
Tell your local newspaper, magazine, or TV
learn more about PH.
This year, the final two days of or radio station about your PH story – they
Download your FREE EVENT PACK A BO PH Awareness Week will focus on
from www.phauk.org, including: UT P will be really pleased to hear from you!
H encouraging conversations about You’ll find hints and tips and a template
• Posters to advertise your event organ donation. press release online at www.phauk.org.
ter, or would prefer For some people with PH, their only
• Cut-out bunting If you don’t have a prin You can also contact our media team on
ugh the post, email option is a transplant. More people need
• Information sheets about a free pack sending thro 01226 766900 or mary@capitalbmedia.co.uk
ll 01709 761450. to sign the organ donor register - and
pulmonary hypertension, office@phauk.org or ca if you would like any advice.
e tea bag! just as importantly, they need to let their
the PHA UK and organ donation We’ll even throw in a fre
families know their wishes too. Can you
an t to ta lk to us ab out PH Awareness Week?
W
• Quiz sheets help us spread the word? You’ll find a free
ll 01 70 9 76 14 50 or em ail office@phauk.org.
Ca ng!
organ donation information sheet online n’t fo rg et to let us kn ow what you’re planni
Do
at www.phauk.org
You can also download our ‘Fast facts about PH’ poster to display on noticeboards or
in windows, help us promote our Medical Education Programme to your GP, or write
AUTUMN 2018 emphasis 12 a blog post about your life with PH. Visit www.phauk.org for more information. AUTUMN 2018 emphasis 13
ife Kath
nd his w
Ronnie a
The importance of
passing on information
PHA UK member Ronnie Spinks has learned
from experience that when multiple people are
involved in your medical care, updates are not
always passed between professionals. Here, he
calls on other patients to help themselves by
sharing information.
I do believe that, where possible,
patients should participate in
helping make life better for others,
not all details about a patient’s hospital
visits are automatically fed back to other
hospitals, or directly to different doctors
which is why I’m offering this advice. – other than to your GP.
During clinic appointments, any Without any current up-to-date new
concerns that affect your way of life can information your PH team cannot be
usually be addressed with the doctors expected to give their best advice when
and PH team who are in charge of your dealing with your enquiries. It also saves
care, and this also includes anyone who doctors time having to readjust their
is a family member or who cares for you. records during assessments at clinics.
From bitter experience, I’ve learned conditions during
that it's in a patient’s own interest to emergency admissions!
“ Without any current either pass on their new information to I understand this all may sound
their PH unit themselves, or ensure some ‘basic’, but if we all work together on
up-to-date new other permitted person involved with keeping each other up-to-date, then
information your PH their illness does it for them. more knowledge will be given to those
Patients are given contact details and dedicated to their PH patient’s wellbeing.
team cannot be expected phone numbers of their PH unit team, The more feedback relating to PH
to give their best advice usually at clinics, so it's always wise to the better results for everyone, as what
carry these useful details and up-to-date you may experience during your illness
when dealing with your medication details with you. In the event could help doctors find a treatment for
enquiries.
”
of you becoming ill, it gives anyone others in the future. Never think it's not
treating you the best chance of providing worth mentioning any symptoms you
correct PH treatment should that be the believe are to do with your PH illness
However, patients can help their PH cause of you becoming poorly. to the team looking after you, or to
team with updates on any changes Sadly, I know from experience any doctors who may treat you for
to their condition. Also, details that not every hospital or A&E whatever reason.
of admissions into hospital should be department has much knowledge
fed back to the PH team where you are a about PH as an illness. I've had doctors
patient, especially when there have been researching PH on their mobile phones, If you want to share any advice or
changes to medications or problems. and others telling me I've got COPD - experiences with other people with PH,
You may be surprised to learn that plus insisting I have various respiratory please email editor@phauk.org
SUMMER 2018 emphasis 15 AUTUMN 2018 emphasis 15
The decision to get a puppy a few months after
My life with
...
being diagnosed with PH didn’t just make Sally
ra y
McHugh happy – it completely turned her world
u r
around. She told Mary Ferguson how a small
M
cockapoo named after her favourite tennis
player has made such a difference to her life.
T he period leading up to getting
Murray was difficult. I first saw a
consultant about my symptoms back
now Bernie had said yes to a dog.
This tiny thing came into our house
and took over our lives. He has enhanced
fixed – I couldn’t climb a mountain – but
as long as I’m sensible about where we
go, it’s great. We can walk for miles, and I
in 2016 and ironically was told that everything in so many ways. never would have believed that last winter.
it was ’very unlikely’ to be a problem I immediately had to stop feeling sorry
with my heart. A year later pulmonary for myself because I had this little dog
hypertension was confirmed, and that relied on me. I had to get up, get him Getting Murray has
it sent both my husband Bernie and out in the garden, and his needs came first. opened up my world
I into a tailspin. It was like a switch went on. It coincided
I spent most of the first part of 2018 with my medication being changed, and
feeling very sorry for myself. I was both things just came together. We’re now making plans for when
really quite depressed, and felt like my A month after getting Murray I had Bernie retires, and our latest dream is
future and the retirement I had been an appointment at my specialist centre to get a big motorhome to drive round
planning for had been taken away. I sat and I was like a different woman. I Europe, obviously with Murray. We used
and watched box sets all day, and I was couldn’t wait to tell everyone how much to think we would fly around the world,
overwhelmed by feelings of how unfair better I felt. but my illness has changed that. I don’t
everything was. He makes sure I get out and exercise, mind now though.
A low spot for me was in early whatever the weather, and it energises I feel much more grateful for the
February. Bernie and I had tickets for me. It feels like a pleasure rather than a small things in life. I walked Murray
an Elbow concert and we had to park chore. I do two walks a day now round up the hill near our house recently and
a long way from the venue. It was a where we live in Sutton Coldfield, and I witnessed one of the most amazing
horrid rainy night and I really struggled feel lucky to have so many lovely routes sunsets I’ve ever seen – it was like the
walking from the car park. I sobbed all to choose from. sky was on fire. And I wouldn’t have
the way through the concert as it made The joy and healing power of the experienced that without Murray.
me realise just how ill I actually was. outdoors has really affected my mind, I refer to last winter as ‘the dark days’.
Everything changed when my and I never would have realised that Now I feel like I’m in lighter days. I’ve
daughter’s friend rang me to say her without Murray. He’s optimistic, really come out of the darkness and
dog had given birth on Christmas Day. buoyant, and everyone’s his friend. And I’m sitting in the light again. I’m full
I’d met a cockapoo, a cross between a that’s the other thing – he’s helped me of optimism, thanks to my specialist
cocker spaniel and a poodle, before and meet so many people as there are always centre of course, but also thanks to
thought they were fantastic, and being other dog walkers to stop and chat to. Murray. I’m in a much better place.
hypoallergenic they don’t shed fur, which Bernie works, so without Murray I’d be
is great for someone with my condition. on my own all day.
The timing was ideal and I persuaded I’m so much more sociable since
Bernie that it would be a good idea. getting Murray. I ring friends to see
if they want to come walking with us,
and it’s helped me get to know the
He has enhanced everything neighbours more. He’s brought a lot
in so many ways of joy to people on our cul-de-sac too!
Getting him has been so expansive and
opened up my world.
I truly believe in good things coming We now plan our holidays around
together at once. I’d started my Murray, and we’ve been to beaches in
medication in the December of 2017 and Northumberland and Wales, where we’ve
was finally starting to feel better, and done lots of walking. I’m not saying I’m
AUTUMN 2018 emphasis 16 To watch a video of Sally talking about her life with Murray, visit the PHA UK YouTube channel. AUTUMN 2018 emphasis 17
C om i n g
Are you struggling
soon !
with stress or anxiety?
New look for
vital information
Help is available to members of PHA UK if you or your
family have concerns about your emotional wellbeing
• Dedicated helpline service 0344 332 9010
• Email support via phauk@anxiety.org.uk
resource M EDICATION
• Assessment and therapy provision
Our flagship publication for people new to
pulmonary hypertension has had a makeover
&PH
for those who need emotional support
ing
manag
ng and
to treati
to bring it up-to-date and make it easier to use. A guide y hypertension
pulmon
ar
• Training and resources for PHA UK
PH& A comprehens
PH&
YOU forcompr
A anyon
ive guide
YOU
e affect
ehens iveed
guide
by
pulmo
for
1
anyon
nary
Helping yo
e affect
hyperedtensio
by n
pulmonary
hypertensio
more about u understand
n
professionals and members pulmonary
hypertension
.
Any feedba
Wh
ck?
pulmonary
at is
Introduction
2
Although PH We
hyp’derte
lovnsi
e to
is a rare dis on?know what
this guide. you think
3
your own. ease, you are
Introductio
This bookle not on Have you fou about
t has been Is there any nd
help guide thing we can it helpful?
providing
you throug
informatio
of the suppor n, advice and
designed to
hout your dia
gnosis;
We we
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Clinic improve
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Please email
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.
4
The PHA UK
U
office@ phauk.org
01709 461 Useful
450 if you wo or call
con
your though tac ts uld like to sha
nderstanding pulmonary hypertension’, the ring-bound book given 5
ts. re
Specialist
centres
to all new PHA UK members and patients across the country, is 6
being re-launched this year with updated content and a fresh new look.
As well as a name change to ‘PH & You’, the publication will be 7
accompanied by a separate printed resource, ‘Medication & PH’, Symptoms of PH
I felt unusually short of breath, I was originally told my symptoms of
which provides information on treating and managing the condition.
breathlessness were down to asthma
especially doing routine things like and I tried every inhaler going. No-one
Helping you understand
going up the stairs. This was unusual
Any feedback?
realised it was a symptom of pulmonary
hypertension. It wasn’t until I was 17, at
for me because I considered myself
ess Swelling
Shortnath
more about
to be pulmonary
in the
of bre Feeling college, when I suffered really bad chest
‘PH & You’ contains chapters on how pulmonary hypertension affects the
ankles,
active. My symptoms also came
or
with e tired
exercis dizzy
arms or pains, collapsed and was taken to hospital.
stomach
hypertension. 3
on very quickly and escalated at an area
We’d love to know what you think about
alarming rate. By the time I finally got
this guide. Have you found it helpful?
a diagnosis I was in severe right-sided
Diagnosing
body, testing and diagnosis, clinic visits, the PHA UK and specialist centres.
Is there anything we can improve on?
heart failure, despite the fact that I was
Although PH is afairly
rare disease, you are not on prior. We welcome feedback on all our
4
active just a few months
your own. This booklet
Sarah has been designed to
help guide you throughout your ngdiagnosis;
pulmonary
publications, to help us produce the
For me, PH is an invisible illness;
best materials for you that we can.
it’s not until I climb a lot of steps
Both publications have gone through a rigorous review process to ensure hypertension
Fainti Chest
providing information, advice and details pain or do something really physical that
Please email office@phauk.org or call
my breathlessness becomes obvious.
of the support that’s available. 01709 461450 if you would like to share
your thoughts. 5
they meet The Information Standard, a certification scheme for health and Symptoms can occur at rest and of life. Because symptoms of PH Fatigue is the hardest thing. It does 6
social care information established by the Department of Health.
more frequently during periods resemble those for other conditions,
of mild exercise, such as walking it is quite difficult to diagnose PH. sometimes get the better of me
around. Symptoms of PH may have In fact, there is often a lengthy delay but I’m positive that one day there
an impact on a person’s ability to between first visiting the doctor
lead a normal life, and perform and receiving specialist care at a might be a cure for PH.
7
day-to-day activities. Such effects hospital.
therefore reduce the person’s quality
Iain Armstrong, Chair of the PHA UK, said: “Relaunching this resource has
been a major project for the team over the summer. It’s vital that patients
receive clear and accurate information at all stages of their PH journey, but
Medication & PH
it’s particularly important at the point of diagnosis. We’re confident these new Any feedback?
publications will help both patients and their loved ones during what is often
It is important to determine the cause of PH,
before the type of treatment is decided. If your PH is
caused by another disease such as congenital heart
It took a while for my medication disease,We’d
then love tomust
your PH know whatasyou
be treated think
well as this about
to start working but I stuck with it thisTreatment
condition. guide. Have you found
for the underlying it helpful?
condition
Conventional 1
a worrying and confusing time.”
may help control the PH.
and I’m glad I did because it’s really Is there anything we can improve on?
helped. The monthly blood tests are We welcome feedback on all our
orpublications,
supportive
In the world of PH you will often find These are terms commonly applied
inconvenient, but worth it. to help us produce the
two types of treatment approaches
are usually discussed:
to medical management and this
book focuses almost exclusively
best materials for you that we can. on this area. However, you should
therapies
regard these medicines as just one
part of an overall treatment plan
Please email office@phauk.org or call aimed at improving your quality of
Conventional life. Increasing emphasis is placed
01709 461450 if you would like to share
or supportive on the crucial role of exercise in the
management of PH. This is likely to
therapy
your thoughts. involve you increasing exercise levels
steadily over a period of time. It is
also becoming more commonplace
for PH patients to enrol onto local
pulmonary rehabilitation courses.
Either way, expert advice on safe,
effective exercise tailored to your
Targeted situation is available from your
therapy specialist PH centre.
2
The books will be published later this year and will
be available to order for FREE from www.phauk.org.
To find out more about how Anxiety UK can support the
I’m now on dual therapy and it’s taken
a few months, but it’s improved my Targeted therapies
Keep an eye on our social media channels for news
lifestyle so much. I found it hard to
go on another drug at first as I felt it Before 1990, there were very few targeted treatments
meant my PH had worsened, but I am available for PH and the survival rates were
somewhere between two and four years. Since then,
now much stronger for it.
emotional aspect of having a diagnosis of PH contact us today
a number of exciting and important new treatments
have become available. These treatments slow the
of when they become available.
progression of PH and may even reverse some of
the damage to the lungs and heart. There are also
newer treatments in clinical trial stages. A number of
exciting and important new treatments have become
available since 1990.
on 0344 332 9010, email us at phauk@anxietyuk.org.uk,
Targeted therapies are very complex targeted therapies, the next few
and this booklet does not cover sections of the booklet includes details
absolutely everything about each about:
treatment. The hope is that you will • The basic science behind each type
Alternatively, you can pre-order your copies by
gain a better understanding of the or group of drugs.
treatments you may be prescribed for
• How the drugs are taken.
your PH. It would also be impossible
and inappropriate to say that one • Problems and side effects associated
type of targeted therapy is more with the treatment.
appropriate for a person than another However – please remember: just
type. The decision about what is the because a side effect is stated, it
most suitable treatment for you must doesn’t mean you will experience
or visit www.anxietyuk.org.uk
be taken between your PH team, you that side effect. All medicines and
and possibly family members. This their possible side effects can affect
emailing office@phauk.org or calling 01709 761450.
booklet therefore aims to provide individuals in different ways.
helpful information about different Hopefully this information will help
treatments for PH without causing too explain why these drugs are now used
much confusion. in the treatment of PH. The book also
To help you better understand gives clarity around the licensing or
15
AUTUMN 2018 emphasis 19og a
YA
fo r t h e m i n d ,
bod y a n d b re a t h
Play your part in the
fight against PH
Clinical trials have transformed medical treatment
for people with pulmonary hypertension – and more
patients are needed to take part in research.
Yoga fan Charlotte Goldthorpe takes
In the UK, before a new drug can be given to patients, a look at its benefits for the mind,
it must be shown to be safe and effective in clinical trials,
and must be approved by the Medicines and Healthcare
Products Regulatory Agency (MHRA).
“takeI intend to continue to
part in any research,
body and breath.
study or trial in the hope
Before there were therapies available to treat PH, people that one day we can all be
”
diagnosed with the condition had an average life expectancy
cured of this disease.
of about three years. Now, thanks to the approval of various
new drugs, this life expectancy is much improved. Carole Ayrton
PHA UK member
Without clinical trials, and the patients who agreed to be
involved in them, these drugs would not be available.
All of the specialist PH centres in the UK are involved in
research, so you may be asked if you would like to take part in
a clinical trial. If you can, please think about getting involved
and playing your part in the fight against PH.
Interested in taking part in clinical research?
Let your specialist centre know!
AUTUMN 2018 emphasis 20 AUTUMN 2018 emphasis 21A beginner’s
y ton
Always s
peak to y
our
guide to yoga
specialis
Jacqui Pa
t centre
embarkin before
g on a n
exercise ew
routine.
Jacqui Payton is the joint owner of Cocoon, a yoga and the mindful moving, the
wellbeing studio in Holmfirth, West Yorkshire. She trained mind is taken away from the
at the Devon School of Yoga and describes her style as an stresses of everyday life and into the realm of pure
‘eclectic blend of hatha yoga and mindful movement, with a moment-by-moment awareness. You let the past
strong emphasis on the use of breath’. She is also a restorative and the future go and come into the present moment.
yoga trainer and a member of the Independent Yoga It's always good to find a teacher you like and can relate
Network. Here, she gives her tips for practicing yoga. to - we're all different and I try not to take it personally
“If you're just starting out, remember to 'start where if someone doesn't stick with me. Then you'll feel more
you are'. Work with your own body and don’t try to push comfortable about talking things through with them,
against it - particularly not comparing yourself to anyone expressing any difficulties or issues and setting goals with
else. Yoga is not a competitive sport. their support.
I t’s easy to see why yoga might be
perceived as a fad. Its popularity has
surged in recent years, with everyone
include increased muscle tone and
strength, better sleep, increased energy
levels and taking control of anxiety
All the gear but no idea?
During your class, develop an awareness of what your body
is telling you and then listen to it and follow its wisdom.
Your body will know what it likes and dislikes. Everybody
Try to set up a short home practice so that you can
continue your yoga between lessons. Have your mat or
chair set up all the time if you have space at home, as a
from athletes to celebrities catching and depression. Common questions about yoga is different and your body may want different things on visual reminder to do it. Maybe play some relaxing music
the yoga bug, not to mention the So, let’s look at some of the beginner different days. Yoga is about deepening your connection to and always start with being still and silent while you tune
Instagram stars uploading their daily styles which could help improve your your body and mind. into your body and breath. Maybe try to remember a short
yoga routines for inspiration. PH symptoms. Do I need any equipment? Use the breath at all times - it will let you know if you are sequence of postures or movements so that you don't have
There’s a growing yoga industry Hatha yoga is a general category Most yoga studios provide mats, but going too far or too fast. If it becomes strained or ragged, to think too much - it becomes automatic. If it's manageable
that’s developed around this that includes most yoga styles. you’re advised to take your own. As draw back and slow down. Aim for deepening the breath. In you'll do it and stick with it.
popularity and it’s much more than It is an old system that includes the well as being more hygienic, this also our stressful daily lives our breathing tends to be shallow. To Remember that yoga isn't all about the body. Meditating
clever marketing. Two of the top three practice of asanas (yoga postures) encourages you to practise at home in- help us relax and draw ourselves into the great effects of the can be even more beneficial for some people, just learning
reasons why people practice yoga are and pranayama (breathing exercises), between sessions. A good yoga mat can parasympathetic nervous system, allow the breath to deepen some breathing practices (and there are plenty of them
for stress relief and its impact on their which help bring peace to the mind and be bought online from around £10 to £20. and lengthen. to help in lots of different ways), or relaxing can all be
general health. body, preparing the body for deeper Anyone can do yoga. I have students who sit in a chair for equally, and for some people, even more important.
I know what you’re thinking - yoga spiritual practices such as meditation.
How much do classes cost? the whole session, but they still get maximum benefit from Try the gentler, and in some ways more powerful, practices
Yoga classes generally cost between £6
is just for flexible 20-somethings who Today, the term hatha is used in such moving the joints through the full range of movements, such as restorative yoga to help with relaxing the mind as
and £10 per session, or a block of sessions
drink smoothies and eat quinoa, right? a broad way that it is difficult to know using the muscles and stretching out. well as the physical body. Deep relaxation is something we
can be bought at a discounted rate.
Wrong. There are many common myths what a particular hatha class will be The mental and emotional benefits of yoga cannot be tend to forget our body needs as much, and sometimes more
surrounding yoga, such as the need to like. In most cases, however, it will be How many people attend overstated. With the help of the breathing exercises and than, physical movement.”
be fit, or super flexible. Others believe relatively gentle, slow and great for per session?
it’s not for men or it’s too expensive. beginners who prefer a more relaxed This can vary greatly depending on
But having practiced yoga for two years style where you hold poses longer. the size of the studio, so this could be
myself, I have never come across any One of the main benefits of anywhere between six and ten in a Carol Keen, a clinical specialist physiotherapist in you would train the muscles in your legs
barriers to my practice - and yoga is practicing hatha yoga stems from community hall or small yoga studio, pulmonary hypertension at the Royal Hallamshire to walk or run, it is important to train the
certainly for both men and women. one of the pillars of the hatha style: to 20 in a gym. Hospital, said: “Breathlessness is the most common muscles in your diaphragm to be able to
Yoga is a group of physical, mental, breathing. Controlling breath can help symptom of PH and patients often fear that taking part in control your breathing. Yoga is an exercise
and spiritual practices or disciplines improve oxygenation of the body and How long do yoga classes last?
any kind of exercise will worsen their symptoms. However, that focuses on breathing control and
which originated in ancient India. alleviate stress in some forms. Other Classes tend to be 60 to 90 minutes long.
Some studios also offer full or half day there are particular forms of gentle exercise and breathing strengthening the muscles. Practicing
Many different kinds of yoga exist, elements of hatha yoga also help with
workshops to deepen your practice. techniques that can help improve breathlessness. Just as yogic breathing at home or attending
so it can be hard to know which relaxing the body and fighting the
n
a yoga class could help manage
Carol Kee
particular style is right for you. stresses of the modern world. Where do I find out about
Most are based on the same basic Restorative yoga is a gentle, relaxing, symptoms of breathlessness.”
a class near me?
yoga poses called ‘asanas’, however, passive style that allows you to relax
Search online for yoga classes near
the experience of one style can be and release the body into a gentle
you or head to your community hall
very different from another. stretch that is held for as long as
or leisure centre to find out their
If you’re new to yoga, hatha and ten minutes. This style makes use
programme of activities.
restorative practices are recommended of a wide range of props, including
for beginners. Other more energetic bolsters, blocks, straps and blankets. What should I wear to a yoga class?
Check o
page 10 ut
styles include vinyasa and ashtanga. The intention is to provide support For women, comfy leggings and a
review for a
Whichever style you choose, you are within each pose, making it easier to loosely-fitted t-shirt and for men shorts
o
'Yoga St f the
likely to see improvements in many completely let go. It’s good if you’re or tracksuit bottoms and a t-shirt.
areas of your health, both physically looking for deep relaxation, and just Remember socks and a cardigan or udio’
and mentally. Some of the benefits generally, a long lie down! hoodie for relaxation at the end. app.
AUTUMN 2018 emphasis 22 AUTUMN 2018 emphasis 23IN THE
The ultimate
postcode lottery
By Iain Armstrong, Chair, PHA UK
A new drug to treat PH has been made available in
LIVING WITH AN
every UK country except England – highlighting
a fragmented and opaque commissioning process
that leaves some patients out in the cold. And
frankly, we’re fed up of not being listened to. PHA UK member Yasmin Swift’s story made national headlines
in July after an anonymous driver accused her of not being
I n July, NHS England announced that
it would not be making Selexipag, a
new drug developed to treat pulmonary
been anything but. We’ve had to fight
to even get around the table in order
to make the patient voice heard.
of Selexipag in November provides
the right outcome for England.
We are currently working on a
disabled. Charlotte Goldthorpe spoke to her about her experience.
hypertension, available to patients with
an English postcode. Those living in
Scotland, Wales and Northern Ireland
NHS England will review the drug
again in November, but they are not
accepting any further evidence.
strategy to ensure we have the biggest
impact possible so we ask that for
now, you don’t do anything. When
Y asmin, aged 19 from Ashford
in Kent, was diagnosed with
idiopathic pulmonary arterial
paper, The Kentish Express, and even
made national headlines in The Daily
Mail, The Independent, The Mirror and The no
te lef t on
can now be prescribed the treatment – We gave them the opportunity to the time comes, we’ll unite and show hypertension just nine months ago, The Sun. Yasmin also appeared on BBC 5 Yasmin
's car.
making a mockery of the concept of a talk directly to English PH patients via commissioners exactly how loud the PH which severely restricts her quality Live to help raise awareness of PH.
‘United Kingdom’. the pages of this magazine, to explain community can shout for what’s fair. of life. Like many people living with She said: “When I first got my blue
Your voices played a key role in why Selexipag was turned down. They Keep-up-to date with developments PH, she struggles to do the simplest of badge I was a bit sceptical. I expected
overturning the initial rejection of declined, telling us they had nothing on Selexipag via our Facebook page tasks without becoming out of breath people to say things and that I’d get
Selexipag in Scotland in May, and in more to add to the press release they (@PULHAUK) and Twitter account or exhausted. funny looks because I don’t look
securing access to the drug in Wales in issued at the time – so they didn’t even (@PHA_UK) But even though Yasmin had come disabled, but I never expected someone
June. The results of the Living with PH have the decency to try. Their press to terms with her PH diagnosis, she would go as far as leaving a note.
survey, which gave the PH community release contains just one line about wasn’t prepared for what was to come. “What made it worse was that it was
a voice, provided important evidence Selexipag and in this context, it’s Carl Harries, clinical One summer’s evening she headed anonymous. I’ve always felt that if
in both cases. actually quite meaningless. nurse specialist in the out for tea with a friend and parked anyone ever asked me then I would be
The decision to make the drug Welsh patients are treated at PH service at Royal in a disabled space on the high street. happy to explain my situation but they
available in Northern Ireland was specialist centres in England and it Brompton Hospital, Despite clearly displaying her blue didn’t even leave a number.
announced in August – making the beggars belief that someone could be said: “Fundamentally, the decision badge, an anonymous person left a “My advice to other PH members
English decision rub even more. denied a treatment that the person on Selexipag is wrong. It has cruel note on the windscreen of her car who might find themselves in a similar
The rejection of Selexipag in sitting next to them can access – brought about a huge amount of accusing her of not being disabled – situation would be to remember your
England is exceptionally unjust and purely because of the postcode on which left her shocked and saddened. worth, hold your head up high, be
disappointment for patients and
grossly unfair, and we’re really angry. their address. The whole process The incident spurred Yasmin on to proud of who you are and use your blue
clinicians alike. This is no longer a
I was invited to be part of the decision- stinks and we’re calling for an urgent raise awareness of invisible illnesses badge with pride. We already have a big
postcode lottery, it is a national
making process in Scotland and Wales, review to give the PH community the and change people’s attitudes, so she enough battle on a daily basis, so don’t
who were fully engaged with the same equality and access to treatment lottery - where some people who took to her Facebook page to call out waste your energy and thoughts on frustrations. At first, I was really
patient voice and ultimately delivered as other disease areas like cancer. come from a different part of the whoever left the message. ignorance. Learn to practice and replace unsure about whether to talk about
.
the right decisions. NHS England have It’s imperative that the next review United Kingdom can get this drug, She was overwhelmed with the one negative thought with at least three what had happened to me and I did
but those in England can’t. And response she received and was positive thoughts. receive some negative comments, but
The PHA UK is campaigning for fair access to treatment via PHocus2021, that is unjust, given the nature of inundated with requests from “Speaking up about life with an the majority were really supportive
the advocacy programme set up to fight on behalf of the PH community. this therapy within a rare disease journalists who contacted her via invisible illness through social and I hope it’s gone some way to help
area and what it can do to help Facebook. Her story featured in her local media really helped to channel my raise awareness of PH.”
Visit www.phocus2021.org to find out more.
people have a better quality of
life.”
AUTUMN 2018 emphasis 24 SUMMER 2018 emphasis 25
AUTUMNFamily Matters
going on around him, so he completely focussed on doing Sue now lives with her second husband Bill Waister with
what he enjoyed and did it wholeheartedly and to the best whom she runs a shop business.
of his ability,” said Sue. She has continued to fundraise since Richard’s death
CELEBRATING
At the age of 21, as his condition deteriorated, Richard was and most recently set herself the challenge of swimming
assessed for a double lung transplant but “it was not to be for 100 lengths at her local pool.
him,” said Sue. Sue embarked on the marathon swim to mark what
RICHARD'S LIFE
In November 2013, Richard became very ill. Staff at the would have been Richard’s 25th birthday.
Freeman Hospital worked with the family to plan Richard’s Although she’s not a strong swimmer, Sue diligently trained
end-of-life care in line with his wishes, which were to two or three times a week in the six months leading up to
remain at home during his final months. Richard and the her big swim and she was thrilled to complete it within
family were supported by Macmillan Nurses. He sadly died two hours. Again, it was the thought that she was doing the
in February, 2014. challenge in memory of Richard that spurred her on.
Richard is desperately missed by Sue along with Joe, now 31, She said: “A lot of my friends are sporty but I’ve never been a
Sue White completed a personal swimming challenge to mark what would and Emma, 30, and Paul. fitness person and I really didn’t think I’d be able to swim so
Sue said: “He’s left a massive gap in our lives. He was just far, but the regular swims built up my stamina and I began to
have been her son Richard’s 25th birthday. Deborah Wain tells the story amazing. I still talk to him. I’m a great believer that the spirit really enjoy it too.”
of the mother and son’s close bond. does not disappear totally.” As well as raising money, Sue sees collecting donations as a
Together Sue and Richard raised funds for the Freeman and way of promoting awareness of PH and its impact, as well as
also for PHA UK. The family had benefitted from a family sharing her memories of Richard.
weekend and Richard also went on a trip to a Center Parcs “A lot of people I talk to now didn’t know Richard, but we talk
resort with other young people from which he returned about him and we talk about PH. That’s really important to
'very positive'. me,” she added.
R ichard White, from Redcar, in the North East, sadly
passed away in 2014, aged 22, after battling pulmonary
hypertension for most of his life.
Richard first showed signs of having PH while at nursery
school but, like many parents in their position, Sue and
Richard’s dad, Paul, were told his breathlessness was due to If you would like to share your family’s PH story,
There are many occasions when his mum Sue thinks about minor conditions. Richard twice collapsed at school during PE please email editor@phauk.org
him, but one moment has particular significance. lessons but doctors insisted he was suffering from a virus.
It was two years following Richard’s death when she was As he got older, Richard was unable to join in normal activities
about to step on to a rollercoaster at the Wizarding World with his older brother and sister, Joe and Emma. However,
of Harry Potter theme park in Orlando, Florida. it wasn’t until he was nine, following a spell in hospital in
Richard was a huge Harry Potter fan and he and Sue Middlesbrough, that he was referred to the specialist PH
loved to watch films in the J.K. Rowling series together. centre at Newcastle’s Freeman Hospital, where a right heart
Because of his illness Richard wasn’t able to fulfil his catheterisation procedure confirmed the condition.
dream of visiting the theme park, so Sue strongly felt the “I had never heard of PH of course and I felt so awful that I’d
significance of her trip. She was determined to overcome her always been chivvying Richard along, thinking he was being
trepidation of the thrill-seekers’ ride in her son’s honour. lazy,” recalled Sue.
She said: “There were a lot of times when our family visited Sue remembers having everything that was known about
theme parks and Richard and I would sit out the rides, him the condition at the time carefully explained to her by the
because he couldn’t go on and me because I didn’t like them. ‘fantastic’ team of specialists.
“Richard would have loved to have gone to the Harry Potter She learned that had Richard been diagnosed just two years
park. He said when it opened that it was something he was earlier, his life expectancy would have been two years unless
going to do one day. The Harry Potter films were among films he underwent a heart and lung transplant. But, as it was, new
we enjoyed watching together, along with the Lord of the drugs were becoming available.
Rings series. The youngster was initially put on nebulised Iloprost. This
was eventually replaced by Bosentan tablets when these
“
became available for children. While in his teens, Richard
I had never heard of PH of course
“HeHe’s
had a Hickman line fitted at London’s Great Ormond Street
left a massive gap in our lives.
and I felt so awful that I’d always been Hospital through which he was again given Iloprost. He was
also put on Sildenafil. was just amazing. I still talk to him.
chivvying Richard along, thinking he was Although Richard could not join in physical activities
I’m a great believer that the spirit does not
being lazy.
” ”
at school, he enjoyed spending time with his friends.
Sue describes her son as “very astute and bright”. disappear totally.
Richard developed a passion for digital technology and spent
“When I got the chance to go, I decided I wanted to try the hours filming and editing video-logs, or vlogs. One of the
rollercoaster and ride it for Richard. As I walked up the steps, vlogs he produced was about how he coped living with PH
I really didn’t want to go on but I felt I had to do it for him. and it was viewed by internet users all over the world.
I did it and then went on other scarier rides!” “Richard couldn’t control his health and a lot of the things
AUTUMN 2018 emphasis 26
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