My 10 y.o. daughter was diagnosed with systemic scleroderma. Can you share a story of getting better with us?

Dear all, my greetings and wishing of a good health. My 10 y.o. daughter was diagnosed with systemic scleroderma 3 month ago but probably had it for couple of years undiagnosed. She is going through a very aggressive treatment (chemo+steroids) at the moment. Very scared for her. I can see she is getting a bit better and I am very grateful to the doctors and nurses at GOSH but when I asked one of the consultant about the prognosis he was quite vague... I asked him if any of his patients got in a long remission, he said that one boy did... Are there any good story you can share to keep our spirits up? Many thanks, Svetlana

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  • Hi there Svetlana,

    Firstly, hello to your young daughter. I'm Charlie and I'm a 42yr old woman who suffers from SSc (systemic sclerosis/scleroderma) and Raynauds Phenomenon. Unfortunately females are more prone to developing SSc, but not necessarily from as young as your daughter.

    So, I've had Raynauds since childhood and developed SSc about 7yrs ago. At first it was a very difficult disease to live with, but as time has gone on it does settle down to more manageable levels. That and learning to live with the symptoms make having a fulfilling life more than possible. Sure, there'll be times when the symptoms will get the better of you. But there'll be far more times where you can live life to the full. What I've also learned though is to live within the constraints this illness can present. If I'm feeling drained, I'll rest up and if my feet are too sore to walk on, I'll put them up until I'm able to get about a bit again. Extra aids around the house are important, things like a handrail in the shower really help.

    Bodily temperature is really quite important as if we get too warm, and especially in summer everything will swell up, and be painful. As I have Raynauds as well it's fighting a constant battle, as the cold triggers the Raynauds off.

    Honestly, it's unlikely that the SSc will ever completely disappear. But that doesn't mean you can't get on with life. In fact I'm the happiest now that I've ever been.

    I really hope that your daughter can glean a bit of hope from my message, as it really isn't the end of the world living with SSc.

    Sending calming vibes,

    Charlie x

  • Many thanks for your reply, Charlie. Wishing you to have more good days when you feel happy as you do now. Hope to hear from moms as I was told the SS develops differently in children as their metabolism is different to adults and their cells tend to regenerate. I want to be hopeful and positive for my daughter but some time it's all too overwhelming...

  • SVBO well in that case I really do hope that your daughter can grow out of it.

    Have you had referrals to specialist rheumatologist's? Ones that specialise in SSc? I saw one that was amazing in Manchester and apparently quite renowned. Her name was Dr Merrick. It'd certainly be worth asking if it's a possibility.

    Wishing u guys all the luck in the world.

  • Thank you for your support, Charlie. We are currently looked after by doctors at Great Ormond Street Hospital. It apparently is the largest unit in U.K. Specialising in SS. Many thanks for info on Dr Merrick.

    I also wanted to share with you that we are looking into special diet for autoimmune diseases. My husband particularly likes you tube Lectures of Dr. Bergman (Auto Immune Disease part 1)

    Best wishes, Svetlana

  • Thanks Svetlana, I'll have a look into that as I'm actually quite aware that certain foods make my pain worse. I've been avoiding potatoes and bread and I'm actually feeling much better.

    Whether or not that's a psychological response to me wanting it to work is yet to be seen. I've been on the diet I'm on since just before Christmas so it'll be a month or so before I can compare results I think.

  • I'm so sorry for your daughter's diagnosis, I know that is very hard on you both. Do you know if she has limited or diffuse systemic sclerosis?

  • Hi, it is diffuse systemic sclerosis

  • Hi. My son has mixed connective tissue disease diagnosed at age 10 also. They initially thought it was systemic sclerosis but his condition has features of rheumatoid arthritis, myositis and lupus as well. He was really unwell when first diagnosed but was initially treated with steroids and methotrexate and he gradually improved. The steroids were stopped after 3 months but he gradually improved further over about a year. His fingers were very swollen and stiff but now (age 13) they are pretty much back to normal. He was also on nifedipine for Raynaud's disease and omeprazole and ranitidine for reflux and hydroxychloroquine for joint pain.

    We have seen massive improvements recently with an autoimmune diet. Many people do not believe that diet can affect such chronic illnesses but the change in him has been remarkable and I would really recommend that you look into it for your daughter. Since following this diet we have managed to stop all medication other than methotrexate (which is a lower dose than we started on). He gets no raynauds at all any more, even in winter. Look on line at Amy Myers, Sarah Ballantine, mark hymen, mickey trescott and their theories on leaky gut as a cause of autoimmune disease. I wish l had known about it earlier. Doctors have never given us any dietary advice because they are not trained for this. We found they were very vague re prognosis etc because these conditions are so rare in children that nobody knows. Please please look at autoimmune diets. It could make a real difference. We have found it difficult to follow it completely as my son is growing and eating loads so we still give him more carbs than recommended on the autoimmune plan (mostly rice and potatoes) but cutting out gluten and dairy and soya has helped tremendously.

    good luck!!

  • Dear Lizzy, thank you so much for your letter - it gave us a lot of hope and courage. We have been looking at special diet for autoimmune disease as well and also try following it. We liked Natasha Campbell-Mc Bride book "Psychology and gut Syndrome " as well as Dr.Bergman's lectures on you tube, as I mentioned it in my letter to Charlie. We try avoiding suger, bread, pasta, dairy. Probiotics and fermented foods are good apparently but my daughter doesn't not like them very much. Many thanks for the names of the diet specialists you gave us in your letter - we will look them up.

    We all are very happy that your son is better now! Sending warmest wishes to all of you.

  • Hi again. I'm glad our experiences were useful for you. I am trying desperately to stick to an autoimmune diet 100% as I think this will be the best chance of him coming off all medication soon. However it's so difficult with a child. On the whole he will eat most things but doesn't like fish or sweet potatoes much. He is just growing so much at the moment and he gets hungry all the time. He takes a packed lunch to school full of meat, vegetables and fruit and has to sit next to all his friends eating crisps and chocolate bars etc. It's not easy for him. I havent managed to cut out rice, potatoes or eggs totally yet. They don't seem to bother him much though and he is really well at the moment so I don't know how strict we need to be. Initially we just cut out dairy and gluten which made a massive difference to his tummy pains and burping (which totally resolved) but when the hydroxychloroquine was stopped he had an episode of joint pain which frightened me so I am trying to clamp down on corn, soya, tomatoes etc. No more joint pains since cutting these out.

    Let me know how you get on. I don't know anyone else whose kids are on this kind of diet and I am still learning how to manage it myself so it would be useful to exchange ideas for any good recipes that your daughter has enjoyed on this diet.

    Good luck.

  • Hi Lizzy, you can find lots of useful recipes in Natasha Campbell-Mc Bride book "Psychology and gut Syndrome ", I have not tried many myself yet as we are still new to it all but what we changed straight away is we stopped buying prossesed foods, sweets, refined sugar and salt - we use natural honey and sea salt instead.

    We try not eating too much meat - mainly fish. We make bone broths, boiling chicken or meat on bones for 2/3 hours. There are lots of interesting lectures on you tube about benefits of consuming it, for instance "How to Do a Bone Broth Fast by Dr. Josh Axe".

    Another new thing we have now - a special fungus which turns milk into quark - a natural probiotic. My daughter does not like it very much - i can only make her drink tiny bits of it with some honey. We know it is supper good for everybody, especially for people who have been receiving chemotherapy type of drugs - it feeds the good bacteria in our guts and make people heal faster.

    Our usual packed lunch: mainly fruit (grapes, apples, berries), veg (tomatoes, cucumber, carrots) with some cold meat - chicken or ham, some cheese or eggs. I know it is not ideal but it is better then the school meals for sure. She eats 3 good meals at home and I am glad she has recently put 2 kg on (she was very thin when she was diagnosed with scleroderma).

    We also agree that it is difficult to follow the healing diet 100% with children but we are slowly moving to that direction...

    It was interesting to read that you avoid tomatoes and eggs - this is new to us but we will look into it.

    Many thanks for you letter, I really appreciate your time and effort. Hope we can keep in touch to support each other.

    Best regards,

    Svetlana

  • Hi. Yes I would really like to keep in touch to get dietary ideas from each other and general support. It's hard to find other parents with similar experiences. I hope your daughter is improving. X

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