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jason

New to the forums, not new to Scleroderma

7 posts in this topic

Hi all,

 

My name is Jason and I am 39 years old. I have Scleroderma and thought I would share my story.

 

When I was 15 I starting getting blue hands in cold temperatures. At the time the doctor didn't think too much of it and said it was just Raynaud's. When I was in my late teens and early 20's I started getting sharp stabbing pains in the middle back, and as they didn't last too long I didn't take a lot of notice. In my mid 20's I was doing a medical exam for a new job, the doctor at the time said that my lungs were of someone 50 years older than me, I assumed that it was because I smoked. I was also starting to notice pains in my chest.

 

When I was 27 I was playing netball (similar to basketball) and after the game I realised that I was more puffed than my team mates, even those that smoked. So I went to the doctor. Long story short and many, many tests later I was diagnosed with Scleroderma with some symptoms of CREST and some symptons of diffuse or systemic. My main symptoms are Raynauds, Esophagitis, Pulmonary Fibrosis, Pulmonary Hypertension, Hypertension and Depression.

 

Whilst I have been limited with some of the things I do (especially work), I try to live a full life. I no longer play netball although I did play for my state 2 years after being diagnosed. Instead these days I have returned to my first love in and that is baseball, I am starting to find that playing is a struggle, however I mostly coach now and love it.

 

The biggest struggle I have is with other people not understanding the changes to "normal" life scleroderma has made.

 

Has anyone heard of a condition called Central Serous Retinopathy (CSR) as being a symptom of Scleroderma? It is essentially a blister on your retina which causes blurry, discoloured and distorted vision, I have suffered from it off and on a number of times over the last few years. The doctors tell me it is caused by stress.

 

Thank you

 

Jason

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Hi Jason,

 

Welcome to the Forums, I'm just sorry you needed to find us. You've got a lot on your plate.

 

We have a great section on Eye Involvement and a wonderful doctor working with us, Dr. Liz Irvin. I know very little about eye involvement and nothing about CSR so I'd hesitate to try and answer this question. You can email her directly, though, at: [email protected]. In the meantime here is a link to Medscape's page.

 

It's nice to have a fellow join us and for me, it's always great to hear of another baseball fan! My kids took the whole family to a game Wednesday night, the Boston Red Sox (my favorites!) vs. the Colorado Rockies (the home team). Talk about feeling a little schizophrenic - I was cheering both sides!

 

Best of luck to you,


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

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Hi Jason,

 

Welcome to the Sclero Forums! You've come to the right place to find people that understand what you are going through. You've also come to the right place for factual medical information. We have several other men on the forums that will pop in and say Hi soon, I'm sure. Jeannie gave you a couple of great links, I hope they are helpful to you.

 

Again, welcome!


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hello Jason

 

Welcome to the forums, it's always nice when a seasoned sclerodermian joins us although I'm not sure you feel the same way! :lol:

 

Take care and keep posting.


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)

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Hi Jason ,

 

My son was initially diagnosed with sine Scleroderma at age 18 because of esophageal dysmotility, restrictive lung issues due to his chest cavity tightening, hardening of vocal cords, + ANA, + Anti RNA Polymerase 1/111, and Autoimmune induced depression. That was changed to UCTD after being on Plaquenil for several months and his symptoms subsided. He's never had skin issues. He's 22 years old now and developed the Raynaud's and SICCA this past winter. Other than the constant 'I'm tired' feeling, he's doing okay. Glad you're coaching. Gareth also tries to play baseball and basketball but tires and over heats so quickly.

 

Take care, Everyone.

 

Margaret

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Hi Jason,

 

Welcome to the Forums! Can we assume you're a Royals fan? :D

 

Take care,

 

warmheart

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Hi Jason,

 

Welcome to the forums! I am so glad you have found us here. As you can see you have found the right place for information, fast replies and friends to help and listen.

I think we have all been in a situation where people don't understand our daily struggles. It can be frustrating. Only the people that are close to me are the one's who truly understand.

 

I see you have already received some great info here from Jeannie. Please come back and visit and ask all the questions you need to!

 

 

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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