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Hi my name is Kobi l am 14yrs old and just going through the diagnosis of scleroderma, as yet l dont know to what degree and here in australia there appears to be no up to date information on the net and apparently very rare in young boys, could some one advise me as to what l might be in for regards

Kobi

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Kobi, I'm sorry to hear you have scleroderma. I have had raynauds since I was 21 then diagnosis with sclero in 1996. I'm 42 now. There is alot of good information on this site and read what you can. Plus remember that were all not the same. Take care and glad you found this site,. Sam


Sam

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Welcome, kobi -

 

Your mother recently posted concerns about you going into hospital for tests using your id. We thought she was kobi, so it will be showing up as your 'first' post, Teenager, scleroderma help.

 

I have linked to it in case you haven't found it already and because there are some good links in it. We have several young people in the forums, so I hope they will chime in soon with some of their own experiences. I know you must be scared, but you are lucky to have found out soon enough to take the bull by the horns early on. I am sorry you found us because of your pending diagnosis, but you will find this community a very friendly environment for informaiton and support.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Hi Kobi,

 

Sometimes it seems like it's the end, then all of a sudden a flare will ease up. Most of us would say "unpredicatbility" is what you can expect, and learning not to get scared when flares hit hard. Last year I was bedridden for months on end (I'm now 41 and have been dealing with connective tissue diseases--CTD's--for over 30 years, without any treatment), and it really seemed like the end of the road, then one day the flare broke like a fever. Suddenly the severe pain left, the fevers were subsiding, and I was up again. Keep watch on the board here since there's always good info turning up, especially in regard to the meds, and the support is so necessary for all of us. There's a lady named Margaret on the board, and her son is 18, so she might be a good one to talk to. She's still in the learning process too, but might have great info to share with you, especially since she's so actively involved with her son and his doctors. Most of all, keep calm, and don't let the "doomsayers" scare you--the info on the web can vary considerably, and it seems like most of us on the board have beaten all the odds!

 

Best wishes to you and your Mom,

 

Elehos

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Carrie, thanks for getting him the link I was just going to see if I could find something for him.

 

Kobi, I wouldn't of been able to tell you what type of sclero you have. I have CREST myself. Hope you went to the link Carrie sent you.

 

Take care, Sam


Sam

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Kobi,

I hope you are doing well. Please, ask us any questions you can think of. You are sure to get your answers here. Hopefully we can help you ease your mind. I know it is scary at first but it gets better with time. You are young, so your symptoms can be addressed now before too much damage is done.

Hang in there Kobi!

Jennifer

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Hey Kobi,

 

I am 19yrs old and live in Australia also. My rheumatologist is currently in Melbourne or Sydney (can't remember which) at a scleroderma conference, and his big issue is scleroderma in young people so rest assured that there are people in australia looking at this illness. The probelm is that there are a lot of different opinions on what is best for scleroderma treatment in Australia.

 

I started having symptoms 7 years ago (yr 8) and was diagnosed in yr 10 with scleroderma, polymyositis and arthritis. It is a very scary time at the start and doctors tend to leave you out of the loop a little because you are young.

 

Really, what you are looking at in the next little while is tests, quite a lot of them. My best advice to you is, ask lots of questions, make the doctor answer every little query you have because that will allow you to feel more in control of what is happening. Secondly tell your doctor every little symptom you have because this will allow them to figure out exactly what is happening in your body. I remember that I felt awkward telling the doctor, this hurts, and that hurts, and I have this little mark here, but it all counts, and as much as you think you are being annoying the doctor needs to know.

 

So yeah, good luck and let us know how you get on.

Jess

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Hi Kobi ,

 

My son, Gareth, just tuned 19 and was diagnosed last Nov. with Sclero. His esophagus has stopped pushing food down, but he has no skin problems. What sent you to the hospital for testing and how did they decide on scleroderma? Best wishes to you as you learn about this illness. There will be lots of internet friends for you to 'call on' whenever you have a problem, question, or are just having a bad day.

 

Take care, Everyone.

Margaret

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Hi Kobi,

Welcome to the forums! I am so sorry that you have found us here because of scleroderma. It is very scary, especially in the beginning, because you have no idea what is happenning, all of the testing and the dr visits. I see that Carrie gave you a link to read up on. Hopefully you will find some answers to your questions and find new friends here to help you along the way.

 

Welocme again!

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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Kobi,

 

Stay strong and remember there are tons of support here for you. You are young, but look at us as your sclero 'buds'. We're all here to help you if we can. It is scary, not everyone always gets all the symptoms so whatever you do - try not to obsess! You are in my thoughts and welcome to the sclero.org! The place for all your needs, some laughs inclluded!!!

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Hi Kobi,

 

I understand that you're scared, sometimes I'm really scared too. But still I'm a living example how this disease can stay very "easy": I have had linearic scleroderma for many years and I can live perfectly normal life cause it has only affected my skin and fatty tissue.

 

I have never had any medication: only exercising and some moisturising creams for the skin. And I'm as healthy as I can.

 

Feel free to contact me

Emmi

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Hi Kobi,

 

I see you have already been given some great information, but I wanted to make sure I gave you a big warm welcome! You will find a lot of information, support and friendship here.

 

I look forward to knowing you better.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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