Pick Me Up! – 30 May 2019

Fact File

Epidermolysisbullosa(EB)refers

toa groupofrare,inherited

disordersthatcausetheskin

tobecomefragile.Theslightest

traumaorfrictioncancausepainf

blisters,usuallyonhandsandfeet

It’scausedbya geneticmutation,

andthereisnocure,but

treatmentaimstorelieve

symptomsandprevent

complications like infections.

Even

walking

fora few

minutes

feltlike

torture

mystEry

misEry

BiG

health

sto

ry

Forover 30 years,CarolineFrancis,

62,fromHavant,didn’t know she

hada raredisease

A

sthesearingpain

inmyfeetbecame

toomuchtobear,

I slowedtoa halt.

Itwas1971,and

I’dmadeit halfway

aroundthecross-country

courseinmyPElesson.

Butthered,dryblisters

thatI’dbeensufferingwithfor

a fewweeksonmyfeethad

flaredupagain.

Limpingbacktothe

changingroom,supported

bymyfriend,I was

inagony.

‘Let’sseepoor

Cinderella’sfeet,

then,’jeered

theteacheras

I easedmyself

ontothebench.

Butherface

droppedwhen

I carefullyremoved

mytrainerstoreveal

theinflamed,aching

blistersbeneath.

I’dhadproblemswith

myskinsinceI was8.

I bruisedeasily,shampoo

mademyscalpitchyandsore,

andI wascoveredinscabs.

My mum thought I just had

worDs: James Hanman, emILY JeFFerIes. pHotos (Instant appoIntment anD How to...poseD BY moDeLs):

aLamY,

GettY

sensitiveskin,butit got

worseat 14whenthe

excruciatingblistersstarted

developingonmyhands

andfeet.

Holdingpencilsin

schoolwasagony,andeven

walkingfora fewminutes

feltliketorture.

Mostevenings,Mum

wouldsoakmyhandsand

feetinwarm,saltwater.

Itwasallwecoulddo,as

doctorshadnoideawhat

waswrong.

Despitethe

constantpain,

I triedtoliveas

normala life

aspossible.

In1977,aged20,

I gota newjob,but

hadtotakelotsof

timeoffwhenmy

feetflaredup.

‘You’retheonlypersonwho’s

everhadtotakea weekofffor

a fewblisters,’jokedanHR

managerin1981.

Everybodyaroundme

laughed,butI washumiliated.

Theyhadno

ideawhatthe

torment

ofconstantpainwaslike

forme.

Then,in1999,I wasinthe

GPsurgeryforanunrelated

appointmentwhenI noticed

aposterwithBLISTERS

writteninbigletters.

It wasfora skincondition

calledepidermolysis

bullosa(EB).

AfteraskingmyGP,I was

referredtoa dermatologist,

whoconfirmedthediagnosis.

EBis causedbya faulty

genethatmakestheskin

morefragile.

‘Howhaveyoumanaged

thislongwithouthelp?’

heasked,astounded.

Sadly,therewasno

cure,butI didn’tcare.

Infact,I wasoverjoyed

thatthiswasa known

conditionwitha name.

Iwasreferredto

DEBRA,a charity

supportingpeople

affectedbyEB.

Suddenly,I hadaccess

tospecialdressings,

painrelief,adviceand

informationonthis

terribleskindisorder.

Thereareover5,

peoplelivingwith

epidermolysisbullosa

intheUKalone,

some with worse types

Ifinallyfeel

supported

Evenusing

a tissuecan

breakthe

thinskin

on my nose

Painful

blisterson

myhands

and feet TURN PAgE FOR MORE

thanmine.

I hadEBfor 30 years

withoutknowing,and

I wishI’dknownabout

DEBRAbackthen.

SoI’msharingmystoryin

thehopethatothersufferers

willreachoutandseekhelp.

I’mnowretiredand

copingwell.

I needa mobilityscooter

togetaround,andI’mstill

tryingtofinda moisturiser

thatworksforme.

ButI knowDEBRAis with

meeverystepof theway.

Visitdebra.org.ukfor

more information