Emma liv­ing with disease

Emma wants to raise aware­ness of the com­plex disease

Hinckley Times - - FRONT PAGE - DANIELLE EAS­TON danielle.eas­ton@reach­plc.com

A COM­PLEX neu­ro­log­i­cal disease has not stopped Emma Brown when it comes to work, re­la­tion­ships and driv­ing.

Emma from Hinck­ley needs a wheelchari to get around but wants to prove that she will not let Char­cot-Marie-Tooth disease take over her body.

Named after those who de­scribed it in the 19th cen­tury, CMT is the most com­mon in­her­ited neu­ro­log­i­cal con­di­tion in the UK.

“My body is giv­ing up, but my men­tal­ity won’t” says Emma.

Now aged 34 she is one of the 25,000 peo­ple af­fected by the disease in the UK, forced to live with a lack of mo­bil­ity and fa­tigue due to the con­di­tion’s im­pact on her body.

“No­body knew what was hap­pen­ing,” she ex­plains, “Even­tu­ally, a neu­rol­o­gist started do­ing blood tests, and then at 14-years-old, I was di­ag­nosed with CMT.”

From a very young age, Emma had an ab­nor­mal walk­ing gait. Be­fore her di­ag­no­sis doc­tors be­lieved that one of her legs could be longer than the other.

As her symp­toms pro­gressed, Emma’s knee would re­peat­edly dis­lo­cate, caus­ing se­vere pain and dis­com­fort. It meant that she could not take part in sports and games in school.

While she was still yet to be di­ag­nosed with CMT, Emma grew to be very self con­scious of the im­pact it was hav­ing on her body. At the age of 11 be­ing un­able to join in with friends left her feel­ing very lonely. She said: “Not know­ing what was go­ing on with my body made me feel very frus­trated and very iso­lated from peo­ple, I was the per­son that no­body wanted in a team.”

Emma was forced to take rest days from her school, John Cleve­land Col­lege, which she says made her con­di­tion worse.

At this point her knee was so swollen, that she could only sit with her leg raised.

After be­ing off her feet for a pe­riod of time once she started to walk again it was much harder due to her be­ing so fa­tigued.

Con­se­quently, her right foot twisted in­wards, and Emma’s walk was now no­tice­ably dif­fer­ent.

Emma was given plas­tic splints to aid her mo­bil­ity, but sim­ple tasks such as putting her shoes on, left her in un­bear­able pain.

Doc­tors gave her crutches as her walk­ing got worse. She had to use a wheel­chair at school. How­ever as a teenager this left Emma feel­ing self con­scious and she re­sorted to work­ing from the li­brary ev­ery day.

“If I had known all the facts about CMT when I was younger then per­haps I’d be more mo­bile to­day.

“Us­ing the wheel­chair at school kept me safe, but had a detri­men­tal ef­fect on my body.”

Emma has been us­ing a wheel­chair per­ma­nently since the age of 17.

After suf­fer­ing from weekly knee dis­lo­ca­tions for five years, she re­ceived knee surgery fol­lowed by an op­er­a­tion to lengthen her Achilles’ ten­don, due to her foot be­ing se­verely twisted in­wards, and had her toes bro­ken and straight­ened with pins to en­able her to wear shoes.

The in­vest­ment an­a­lyst worker for Hinck­ley’s Cadent Gas, says that after years of in­creased nerve dam­age, her hands are wors­en­ing, which means that she has very lit­tle strength in them.

She now needs as­sis­tance in get­ting show­ered, dressed and be­ing trans­ferred from the toi­let or bed.

“The last few years have been very dif­fi­cult as I now have to have my food cut up and I’m un­able to lift a cup to drink.

“Drink­ing a cup of hot cof­fee from a straw just doesn’t taste the same.”

How­ever, de­spite hav­ing spent most of her life in pain, this has not stopped Emma from reach­ing per­sonal goals and achieve­ments.

She re­cently cel­e­brated after buy­ing her first home with her part­ner, Bobby Hartshorn, who she says is su­per sup­port­ive of her con­di­tion.

“I feel very lucky to have such a sup­port­ive part­ner who has seen first­hand the disease slowly take away my in­de­pen­dence over the last 10 years.

“We take each day as it comes, for­tu­nately we work to­gether so I can keep go­ing to work, which en­ables me to con­trib­ute and en­joy our lives as best we can to­gether.”

Emma has said that her col­leagues are also very sup­port­ive of her con­di­tion, and help her with daily strug­gles, to en­sure that her dis­abil­ity does not af­fect her qual­ity of life.

She adds: “Work is a big part of my life and I wish to con­tinue as long as I’m phys­i­cally able to.

“Even the fact that I can only type with the knuckle of my baby fin­ger doesn’t stop me push­ing my­self and pro­gress­ing up the ca­reer lad­der.”

Emma’s most re­cent bat­tle has been her tired­ness, which took its toll in 2016 when she fell in the shower after fall­ing asleep.

Ex­treme fa­tigue meant that Emma had been con­tin­u­ally fall­ing asleep in var­i­ous places, even at work, so she en­listed the help of her doc­tor who re­ferred her to a sleep and res­pi­ra­tory clinic.

“I was un­able to lie down to sleep at night, and I just felt like I was suf­fo­cat­ing.

“I was suf­fer­ing with headaches ev­ery morn­ing and was re­signed to sleep­ing up­right in bed for months,” says Emma.

After 9 nine months of failed sleep clinic tests, Emma re­ceived a lifechang­ing ap­point­ment with a res­pi­ra­tory clinic. “I’ll never for­get that ap­point­ment,” she said.

“Within sec­onds of meet­ing the doc­tor he placed his hand on my di­aphragm and asked me to sniff and that was it.

“CMT had caused res­pi­ra­tory mus­cle weak­ness. “I was re­lieved to fi­nally get help.” Doc­tors found that Emma’s lack of sleep was due to her be­ing starved of oxy­gen when she lay down, which was also the cause of her morn­ing headaches.

She now uses a ven­ti­la­tor at night to help reg­u­late her breath­ing and has yearly blood tests to check her blood oxy­gen lev­els.

“Since the di­ag­no­sis I’ve never slept bet­ter, which is a huge re­lief,” ex­plains Emma, “How­ever, the im­pact of the ex­treme fa­tigue over sev­eral years has re­ally taken its toll.

“My fin­gers, hands and arm mus­cles have de­te­ri­o­rated rapidly.”

Emma is just one of around 25,000 peo­ple who suf­fer from CMT, and its var­i­ous forms.

CMT is a ge­netic con­di­tion that da­m­ages the pe­riph­eral nerves - these are re­spon­si­ble for pass­ing on com­mands from the brain to the mus­cles and for pass­ing in­for­ma­tion to the brain about sen­sa­tions such as heat, pain, cold, touch and most im­por­tantly, bal­ance.

When these sen­sory nerves be­come dam­aged, peo­ple are said to have neu­ropa­thy.

Be­cause of the nerve dam­age, suf­fer­ers of CMT disease may find that their mus­cles be­come slowly weaker over the years, par­tic­u­larly in their feet and hands.

In some cases, the feel­ing in limbs can be­come duller and numb in the same ar­eas.

There are nu­mer­ous types of CMT. Emma suf­fers from type 1A, which runs in her fam­ily.

Her grand­mother, mother and brother all suf­fer from the condi- tion, while her two sis­ters are not yet show­ing any symp­toms.

Re­search is still con­tin­u­ing into Char­cot-Marie-Tooth disease, but in the mean time, Emma hopes to spread aware­ness of the con­di­tion, its symp­toms and im­pact on her day-to-day life.

“I would like to raise aware­ness to help peo­ple un­der­stand what CMT is, and in­crease dona­tions to the char­ity to fund re­search for treat­ments or a cure,” ex­plains Emma.

“Ul­ti­mately, I want to in­spire peo­ple with any dis­abil­ity to live their lives fully, re­gard­less of dis­abil­ity.

“I could eas­ily sit at home with­out a job, but I want to prove to peo­ple how able I am.”

For more in­for­ma­tion or to fundraise or donate for Char­cot-Marie-Tooth disease, visit the web­site at http://cmt.org. uk/.

34-year-old Emma Brown from Hinck­ley, suf­fers from Char­cot-Marie-Tooth disease and has been us­ing a wheel­chair to get around since the age of 17

Emma with her sis­ter Laura, mum Tracey and brother Clint

Emma Brown with her part­ner Bobby Hartshorn

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