The Patient's Voice

Views expressed in The Patient's Voice are not necessarily those of the Dysautonomia Information Network or its members.

Dysautonomia is treated differently around the world. In this edition of the Dysautonomia News we bring you the story of Emma Nicholson, which was originally published on June 19, 2003, in The Advertiser: Ipswitch Edition, a newspaper in the United Kingdom.

From In-Patients to the Best of Friends

A patient touched by a girl on the same hospital ward has decided to try and help change her life.

Jackie Norman from Ipswitch met 20-year-old Emma Nicholson this month when they were both in-patients at Ipswitch Hospital.

Jackie was so moved by Emma's story she has chosen not to simply forget their friendship after being discharged.

Emma has Postural Orthostatic Tachycardia Syndrome (POTS) which affects her ability to be upright.

The rare condition means that when she attempts to stand up her heart rate increases abnormally, her oxygen levels decrease and she passes out.

She has spent a year in hospital and now has to use a wheelchair despite having full use of her legs.

When Emma and Jackie swapped stories in hospital Jackie was so shocked that the treatment Emma needs is only available in America that she has chosen to raise funds to send her there.

Jackie, who is recovering from a ankle injury, said: "Emma has been so brave and I think that she deserves so much more than just laying in bed, barely able to move some days."

"I am going to do whatever I can to get her to America."

A-Level psychology student Emma, from near Hadleigh, suffered further in December when her father died of a brain hemorrhage.

She said: "I had a really hard time in hospital, especially when my dad died, but I found a new friend in Jackie."

"Hopefully with her help I can to get to America I can get stabilized and won't go through periods when I can't even sit up or get out of bed."

"Once I have had the treatment I can have medication shipped over here and my quality of life should be massively improved."

Emma's condition began in March last year and doctors think it was brought on by surgery to remove her appendix.

Only 13 people in this country have been diagnosed with the condition which has left Emma needing professional care round the clock.*

Each day she has to take 97 tablets, inject a pump into her stomach to prevent her being sick and exercise her legs to maintain the muscles.

Since coming out of hospital she has spent much of her time drawing and designing tattoos.

She said: "I think something good comes out of everything bad and as well as bringing me closer to my family and friend I have also been able to spend more time drawing."

"I would like to become a psychiatric nurse in the future which is why I have continued my studies but I need to be on my feet if that is to happen."

She added: "The doctors in hospital were great and found me information on the internet but basically told me I had to get used to life in a wheelchair and wait for medical advances to reach Britain."

"I am constantly scared that I could be back in hospital again soon but hopefully, with Jackie's help, things will now only get better."

Did Emma make it to America? Find out in the next edition of the Dysautonomia News.

* DINET is aware that more than 13 people have been diagnosed with POTS in the UK.

Emma's Corner

Dysautonomia News will now be featuring "updates" from Emma Nicholson, a POTS patient in the United Kingdom.

June 3, 2004

Hi Everyone!

Thought I would write an email letting you know how things are going at this end...

Well, I am getting going on my new job and so far so good!!! I'm really enjoying it and have learnt so much in such a short time!! I have been chilling, studying and working...mostly chilling out enjoying the sun we had. I had a BBQ that went well. It was nice to catch up with people I haven't seen in a while.

I go on holiday in August to Spain, which I can't wait for. Then I'll go wheelchair skiing (mono skiing) in December, which will be interesting I think.

I bought a laptop the other day. It's not a really good one, but hey it does the job and that's the main thing.

I'm starting to go out loads now, which is cool. I like the sunshine, but I have these "dizzy spells" in hot weather, but never mind. I had my check-up at the hospital, which went fine. I go back again in three months, which is pretty good. He isn't attempting to stand me, and no more tilt tests for another year. That's not so good, but life goes on and I'm happy!!

Anyway, I hope you are all doing well.

Take care,

Emma XX

Dysautonomia News is a quarterly publication of the Dysautonomia Information Network.
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