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Lucy's Mum: Mother of a Linear Scleroderma Patient

You could not pinch her skin as it was so hard.

Striped Orchid by Shelley EnszHi, I am writing this story about my daughter Lucy, as I hope this may help somebody who may be in the same situation, with their child. In 2005, a teacher noticed a mark at the back of her leg which looked a little like a bruise. I asked Lucy if had she done it in school and she replied, "No mum. I don't how it happened."

I thought it would go away, but it didn't. It got worse and hardened and was spreading on the back of her left calf. I started getting concerned and took her to my general practitioner. He looked quite puzzled and said, "I don't think you have anything too worry about. She's moving okay. It doesn't hurt but to be on the safe side I'll get you to take her to hospital for an X-ray." I had to wait for an appointment anyway.

I took Lucy back to the hospital and a doctor in the hospital took the X-rays. He looked at Lucy's leg and said, " Nothing showed up. She's moving her leg, but I can see what you mean. Her leg looks like it is getting thinner. I think we should do a MRI scan on Lucy, but you have to wait for three months."

During this time Lucy's leg gradually deteriorated. It spread to her thigh. Anyway, finally Lucy got her appointment for the MRI scan. It was three months and two weeks of waiting so by this time I was panicking. She had it done, and we went back to the hospital to see a vascular consultant. He looked rather worryingly at her scan results and sent me straight over with her records to another pediatrician. She said to me, "I thought I would be looking for a tumor but I can tell it is not that." My heart started racing. I didn't know what too think. She says, "No, it is a disease called cavernous hemangioma." Which she described as a birth mark under the skin. I sighed. I said, "Thanks for your help. We now finally know what my daughter has."

Only to find out two months down the line that she was wrong. So we went back to the same hospital but to another vascular doctor. He put a machine on Lucy's leg to hear her blood flow and he said he still wasn't a hundred percent sure and would confer with another doctor in Great Ormond Hospital.

By this time Lucy's leg was really thinning and her skin was hard. You could not pinch her skin as it was so hard. I came on this site and read a story because I thought there must be a way of getting some kind of similar diagnosis. I typed in google 'my daughter has thinning hard skin' and this sclero.org web site came up. I read some of the stories and was getting nervous but one story seemed so similar. The little girl was seven when the bruising started and she had the same kind of symptoms. I read it and I thought, "I wonder if that's what Lucy has?"

Eventually we received the letter from Great Ormond Hospital. We went there on the 19th of June 2006, and finally we got the answer. My daughter has linear morphea scleroderma in an aggressive form. I felt some relief as it took nine months and a lot of heartache to get there but I know we were lucky in a way as I have heard of cases where it takes years to get a diagnosis and the linear can cause more problems. Thankfully it has not started affecting her muscles at this stage.

In August, Lucy had to go in the hospital for two weeks to have a biopsy from her leg. She was put on steroids and methotrexate through an IV drip. When weleft the hospital, she was given the medication in tablet form. She was then on steroids for three months and methotrexate but was taken off the steroids. During this time on steroids she put on weight, but her leg was feeling and looking a little bit better. She still had to take the methotrexate. I give her 10 mils. Obviously she was monitored with blood tests and she also takes folic acid 2.5 mls a day. I was also putting double base cream on her leg.

By January 2007, we could notice a significant change. Her leg wasn't as hard and it was getting back too how it used to be. By June her leg was looking really good. By the way, you cannot beat Great Ormond Hospital. It is a lovely hospital and lovely people.

Now in June 2008, the methotrexate has reversed at least eighty percent of the damage the linear morphea had done. She also feels comfortable in wearing little shorts. You wouldn't even notice she had linear scleroderma. She still takes the methotrexate and folic acid and has regular blood tests. I do know methotrexate is a strong drug and Lucy is lucky that she doesn't really get any side affects and it really works for her. I think she will still be on it for at least a few more years but it is worth it. Obviously if it was making her more ill or I would rather her not have to take any medication, but too see how well it has worked it is like a godsend.

I just thought I would write Lucy's story on here as even if it helps one person it might help someone. I have photos of before and after and I will upload them shortly so you can see the difference in her leg. If anyone would like to ask me anything I left my email on here, please feel free to email me.

I don't know everything but I can try and help. Thanks for this web site.

To Contact the Author

Lucy's Mum
Email: [email protected]
Story edited 06-24-08 JTD
Story posted 10-03-08 SLE

Story Artist: Shelley Ensz
Story Editor: Judith Thompson Devlin
LINKS
Difficult Diagnosis
Difficult Diagnosis Stories
Juvenile Scleroderma
Juvenile Scleroderma Stories
Linear/Morphea Scleroderma
Linear/Morphea Stories
Medical: Diseases and Symptoms
Scleroderma Experts (Worldwide)
Symptoms of Systemic Scleroderma
Types of Scleroderma
What is Scleroderma?

ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

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