Jump to content

Do you want up to date information about Scleroderma? Check out our Medical pages at www.sclero.org for all your Scleroderma questions!


First time posting

  • Please log in to reply
11 replies to this topic

#1 CREST at 16

CREST at 16


  • Members
  • Pip
  • 3 posts

Posted 01 May 2009 - 07:04 PM

I have had this account for a while but I have never used it, until now. I am 18 years old and I was diagnosed with scleroderma at 16. I started noticing my hands changing colors when I was about 12 or 13. I also had developed calcium deposits on my elbows and my doctor ordered surgery (I was 14) thinking I had an infection. No infection was found and my doctor finally decided to do blood work and found out what I had. To this day I dislike that doctor for not catching and treating this earlier. It took 1 year before we (my parents and I) knew what was wrong with me.

Over the years the skin on my fingers has become very tight and my nails now curve down and look deformed. I have scars on my elbows and wear long sleeves to cover them up because they aren't very sightly and my arms looked bowed when not covered, and the skin on my face is tight and full of red spots.

I guess I just felt like coming on here and saying how I feel. Often times I ask "why me?" I am young, I have my whole life ahead of me and I have to deal with this horrible disease. I hate it. None of my friends know about my condition. They don't know I'm taking 8 or 9 different medicines a day, they don't understand why I wear long sleeves, even in summer; they don't know what I'm going through. They don't understand just how painful it is to hit my fingertips on accident, because of the sores. They just don't get it.

I wouldn't be complaining as much if I was like 40. Though I know no matter what age this isn't pleasant. I just wish I had a somewhat normal and healthy life longer than I did. This is something that I will have to live with for the rest of my life, which is hopefully for many more years. I know people have it worse than me. Luckily this hasn't affected my internal organs. I know everything I'm writing is all over the place. I'm sorry.

The motive behind me finally speaking out is the last of my "good fingers", which I called the fingers that still looked unaffected and had no thickening of the skin, has recently changed. The skin is becoming thick and the nail is starting to curve. And that has got me feeling pretty down.

I just want to ask... does it get any better as the years go on?

Thank you to anyone who read all this. I just felt the need to finally try to talk to people who DO understand.

#2 Margaret


    Senior Gold Member

  • Members
  • PipPipPipPipPipPipPipPip
  • 998 posts
  • Location:Pennsylvania

Posted 02 May 2009 - 01:30 AM

Hi CREST at 16 ,

I read your letter and it helps me understand what my own kid is feeling. My son, age 20, is Down Syndrome and Autistic, with very limited communication/speech. Your letter helps me understand his internal emotional issues that he can't explain. My son was diagnosed with sine Scleroderma at age 18. It's been switched to UCTD after he was put on Plaquenil and internal problems subsided a bit. His issues were all internal --- hardening of his esophagus, rib cage, major fatigue and weight loss, and loss of voice. His senior year was so hard for him because of all his problems. My heart goes out to you and I hope you're working with a good specialist.

Take care, Everyone.

#3 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,706 posts
  • Location:in the Rocky Mountains of the USA

Posted 02 May 2009 - 05:19 AM

Ah, Sweetie, I am so very sorry you are going through this at such a young age. I wish there was something concrete we could do for you. You will have the sympathy and caring of everyone on the Forum.

Warmest hugs,
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network

#4 jefa


    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,325 posts
  • Location:Scotland

Posted 02 May 2009 - 06:46 AM

Hi, Crest at 16. Welcome to the Forums. I am glad you finally decided to post. We have a few members around your age. I hope you will get a chance to meet them. Here is a link to a recent post by one of them, our good friend Emmi, aka epasen.
Warm wishes,

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#5 jenee


    Bronze Member

  • Members
  • PipPip
  • 23 posts

Posted 02 May 2009 - 06:52 AM


I am sorry you are going through all this at your young age, but I justed wanted to say welcome and hi.


#6 epasen


    Silver Member

  • Members
  • PipPipPipPip
  • 233 posts
  • Location:Lohja, Finland

Posted 02 May 2009 - 06:54 AM

Hi there,

I was only 6 when I was diagnosed with sclero and I'm 19 now. My life with sclero seems totally different than yours though, and I think the main difference is the way I take an attitude to it. I totally know what you mean when you said those things about your friends, when they don't understand why I do this and don't do that. It's really hard to explain to acquaintances in school and hobbies so I don't usually do it, but all of my closest friends are very supportive and loving.

If you want to talk more, you know where to find me. I'm right here. :)

Take care,

#7 CREST at 16

CREST at 16


  • Topic Starter
  • Members
  • Pip
  • 3 posts

Posted 02 May 2009 - 07:57 AM

Thank you everyone for your kind words! :) I try to have a positive attitude about all of this and there are just some times where I just break down. I'm feeling better and I'm glad I got to get everything off my chest. Thank you, again!

#8 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,921 posts
  • Location:U.K.

Posted 02 May 2009 - 10:39 AM

Hello Crest at 16

Your comment that you wished to have limited sclero at 40 made me laugh, I was diagnosed with diffuse sclero at 39 and it still sucked! :lol: In the space of 6 months I went from looking normal and having mobility to being barely able to walk and being able to apply the word disfigured to myself.

I do have one suggestion for you though, get shot of the long sleeves. Sclero has disfigured my feet, legs, hands and arms yet the last dress I bought (for a wedding) is sleevless and the jacket to go with it is short sleeved. Wear your war wounds with pride.

I have been living with sclero now for nearly two years (going from diagnosis) and it can get better, the only thing about sclero we can control is how we react to it. I always say there's still life, good life, to be had after scleroderma, it's just that it looks nothing like you thought it would but that's not necessarily a bad thing. You could still have years ahead of you, you just need to come to terms with the fact that Scler O Derma's coming along for the ride, the freeloading git.

As for people who are healthy they soon get symptom fatigue when we discuss ours and as they have no real concept of what it's like to live with pain just stare blankly when we talk about it. They're on the outside you're IN with the IN crowd.

I'm looking Scler O Derma straight in the eye and I say...BRING IT ON!!

Take care.


P.S. Sorry I'd ike to say more but I have to go and hide under my pillow now. :D
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#9 jillatk


    Senior Bronze Member

  • Members
  • PipPipPip
  • 78 posts
  • Location:Colorado

Posted 02 May 2009 - 11:56 AM

Hello Crest at 16,

I'm glad you decided to post. This is a great place to get support and vent. Be forewarned that all of us are a bit enthusiastic about living our lives to the fullest. Yup you got a awful disease, nope you don't have to lie down and die. You have a disease but it doesn't have to have you. You are way more than a disease and you can do great things despite it (or in spite of it).

Here is a great emotional adjustment link . I would also encourage you to consider finding a therapist you could work with - it might help you through this transition into adulthood with this disease.


#10 Sweet


    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,890 posts

Posted 02 May 2009 - 03:49 PM

Hello crest at 16 ~ goodness Love, I'm so sorry you have CREST. I do as well. I'm glad you've decided to post so we can get to know you, and help if possible. Please know you are among people that truly get it and understand.
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)

#11 Penny


    Silver Member

  • Bloggers
  • PipPipPipPip
  • 160 posts
  • Location:Suffolk, Virginia, USA

Posted 02 May 2009 - 03:52 PM

Dear CREST at 16,

First, I want to welcome you to the wide world of posting here, much of the stresses that we live with are because we have to keep things hidden, feeling like we are different and just wanting to fit in. Here, you don't have to hide anything... we do not have scars, we have badges of courage and survival.

You are the same age as my daughter, and that is an exciting age when the whole world opens up for you with new promise and new hope... it is official, you are an adult. Remember, you have CREST, it soes not have you so never let it dictate what and who you are.

Speaking about difficulty to those who have to deal with simular things can be very freeing... you are not alone. You have a family here-- Aunts, Uncles, brothers and sisters who will always have open arms to hug and jokes to share when you feel down.

#12 LisaBulman


    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,135 posts
  • Location:Massachusetts

Posted 04 May 2009 - 04:45 AM

Welcome to the forums!

We all understand exactly what you are going through! You will always have a sympathetic ear here and words of wisdom and encouragement to go with it. No one will ever truly understand what you are going through unless they have what you have. It doesn't matter what age you are. At every age there always different struggles. I too wish my life was normal, but it isn't. That's ok though. The older I get, the more I learn, the more I learn, the harder I fight!! Of course there are days when I have a pity party, but that is not very often. Positive attitude and my family keep me going. If I gave up, my kids would know and then who would take care of them and hubby?

Stay strong, stay positive and come here when you need support or just want to say "hi".

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)