Hi, has anyone been diagnosed with Scleroderma since childhood?

Hey guys, I wonder if anyone can help. I'm hoping to find someone who has been diagnosed with Scleroderma from childhood. My cousin has Scleroderma, Raynaud's, Arthritis, lung problems, swallowing problems, loss of finger pulp...... and the list goes on and on! She was diagnosed at the age of 10, she is now 33 and to be honest they didn't really expect her to live this long. She isolates herself loads and I feel would benefit from having more support and being able to talk to some one who can identify with her condition, situation and circumstances.

If your out there, please let me know so I can encourage her to participate in this forum. If your not, but have helpful suggestions, info about support groups in London etc, I'd be soo very happy to hear from you.

All the best

jcj

17 Replies

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  • I wasn't diagnosed as a child , it seems they possibly didn't know about it, when I was suffering from agonising constipation etc. It's really only since it was discovered in my oesophagus about 9 years ago that I've come to realise that it's been creeping through my digestive system since I was about 7 (I'm now 46), there's nothing you can do about it ,apparently, I do feel I want my younger son checked out though as he has often displayed similer symptoms. At least he'd be prepared if he knew in advance that further problems would likely present themselves.

  • Hi SandraMarie

    Thank you for replying so quickly. It's amazing how many associated conditions there are and can be linked with scleroderma!

    I know my cousin has problems with constipation and swallowing and reflux to the extent that she also sleeps semi propped up (if that makes sense). I am aware too of her frustration at the very fact that you cannot do anything about it, and with also being in constant pain....inspite of the painkillers.

    I hope you are able to get your son tested very soon (and hope he gets the all clear). I guess the fact that it's not (or presumed not to be) passed down / inherited offers some hope. I'm only really understanding more about it myself so if I have wrong information there, forgive me, thats my understanding thus far.

    I am glad that I found this forum, I've already told her (my cousin) and hope she joins soon!! I've had replies already from yourself and Lifeforce and they have both been really helpful.

    More and more I see how individual everyone's experience of scleroderma is. Also how many people have it! Up until yesterday, she was the only one I've ever known to have it! I'm 35 and grew up with her, so have seen how it affects her personally, but have never met anyone else with it, or aware of it!!

    Thanks again for your time and good luck with your son.

    Regards

    Julia

  • I was also diagnosed later in life 42,I am 53 now but I remember things that happened when I was young that had to be connected to the scleroderma. Terrible back pain in my teens, tennis elbow in my twentys, always having ice cold feet and hands. So maybe the fact that your cousin had a good doctor that knew what was going on was a blessing. Her symptoms sound about normal for systemic sclerosis and maybe she should talk to her doctor about an antidepressant,I take Zoloft and it really does help. Depression is a real symptom of this disease,that and having a hard time sleeping.If you take the Zoloft at bedtime it can help with that as well. Let your cousin know their is good information on this site and join in.

  • Hi

    Thanks for the reply. I've already told her about it, and am hoping to still find someone who's scleroderma was severe enough at childhood to be diagnosed. Unfortunately hers was severe enough at that age to be picked up, she first started exhibiting huge (noticable/ visual) symptoms at around 5 years old. Because of the severity of her condition and associated conditions, they never expected her to live this long. There were two other kids she knew who had similar symptoms / conditions, but they both passed away years ago.

    It appears most people get diagnosed in adult hood/ the condition starts, but as hers started from infancy, I thought it would be nice to find someone who could relate to her on that level, rather than just having scleroderma (though that in itself is hugely beneficial) because then she can share more easily her experiences and know she's not the only one. For example, her appearance and limitations at junior school and beyond caused issues.

    She is already on anti-depressants, but I'll tell her about what you have (zoloft) I know the sleeping is a huge issue. She has problems swallowing and has to sleep semi propped up, getting comfortable is part of the problem there too.

    It's great that you responded so quickly. I'll let you know how it goes. Thank you loads for your help and advice.

    Kind regards

    Julia

  • Julia, Has she tried Nexium for the reflux?It is very good.

  • Hi,

    I'm not sure, but will ask her about that one & let you know. Do you have problems actually eating & getting food down too?

    Many thanks.

    Julia

  • Yes Julia, I have been taking Nexium for years.I had scleroderma about 3 years when I really had trouble eating and my esophegus was scarred. My dr. was married to a gastro dr. and she had him run a bunch of tests and he started me on the Nexium. I think without it I would have starved.

  • Thanks for this. I'll pass it on!

  • yes i have had systemic sclerosis for 12 years. i got it when i was 9yrs old i am now 21

  • i would love to encourage her i have Raynauds,lung fibrosis,sleep Apnea, acid reflux disease and so much more. my throat does close up now it started with trouble swallowing. but there is a solution that i do and i feel like a normal person. i go to college and everything. There is hope!

  • Hey 11elisa8

    Its so great to hear from you! I don't know that it would make any difference her knowing someone else who has experienced the same conditions as her since childhood, but I really think it will!!!

    Hopefully she'll sign up, it may be nice for you to also know someone who has been where you are too!

    Thank you so much for getting in touch. Good luck with college. I don't know you, but I'm so proud of you!!

    Keep it up.

    Julia

  • Thank u! please im here if u need me :)

  • Bless your heart Elisa,you have spent your childhood in a battle with this disease and still show everyone that anything is possible. I am proud of you too!!

  • Thank u so much i'm just happy to know i'm not alone! :)

  • Hello, iam the cousin that has been mentioned by jcj1live...I am 32 (was admitted to great ormand street hospital aged four, 3yrs of tests. And experimental research at northwick hospital a diagnosis was reached) I suffer from scleroderma, rheumatiod arthritis, raynauds,asthma,migraines,depression.ignorance has been my method of coping and I am finally ready to say..my name is a.Joseph and I am not ok.wow wasn't that painful(obviously the typing was a strain but one mustn't grumble...

  • Hello!

    Am glad that you joined this, I hope you use it and get all your questions answered! You know, I knew you were young when you were diagnosed but I didn't actually remember how young!!! I said 10, wow, I was soo far off!

    I hope its helpful. I think sometimes I don't/ didn't like to ask you too many questions because I knew you didn't like talking about it. I'm happy I know more, and happy your here!

    Love you cuz!!!

    Julia

  • Hello my name is elisa im 21yrs old have had systemic sclerosis since i was 9. i have rheumatoid arthritis, osteoporosis, lung fibrosis, sleep apnea, gastritis, acid relfux disease, raynauds.and chiari ugh i know a long list please let me know if u have any questions i am here and happy to help! ;) there is so many natural things that help me with my stomach problems and everything else and they can help u too

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