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Are there any younger sclero patients here? (30s?)


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#1 greypilgrim256

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Posted 08 June 2015 - 07:19 AM

I was only diagnosed a year ago, and while I seem to be doing pretty well (on 17.5mg methotrexate a week) I still feel changes going on.  Just looking to see if there were any younger folks here that have been diagnosed and how they are doing.  

 

I am scheduled to go to Chicago for an appointment with Dr. Burt for a Stem Cell Transplant evaluation in June.  My skin score has gone lower and is I think a 9 or 10 (thankfully) and I am still pretty active and am definitely doing better than I was a year ago.  Hands are still stiff but loosen up at night.  As far as I know I don't have any serious organ involvement but I'm sure I will get every test under the sun in Chicago to determine where I stand. 

 

 

Just looking for some advice on how to deal with all of this. Not easy going from a very fit 33 year old guy to facing a potentially life threatening disease with no known cause or cure.  



#2 Shelley Ensz

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Posted 08 June 2015 - 10:00 AM

Hi Grey Pilgrim,

As I understand it, it's the type of scleroderma and its own severity that matters, and that is independent of age. However, scleroderma in males tends to be caused by environmental exposures and it has a tendency to be more severe than in females.

But scleroderma is very persnickety! Your case might not be anything at all like someone else your same age. It's nigh impossible for any of us to find another person with a matching history, unlike so many other diseases that follow predictable courses.

Good luck with your evaluation. If you are too healthy to be a stem cell candidate, that's a good thing, and if you are in need of one and there are no other treatment options, that's a good thing to know as well.

I'll be sending good thoughts your way!
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 Ron

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Posted 08 June 2015 - 01:59 PM

I developed symptoms when I was 21, diagnosed when I was 24. My progression was fast at first, then it slowed right down. But now its active again, and I have internal organ involvement. Scleroderma for some people goes in waves, its active then it stops. Don't lose hope. I am 52.

I use to work in an autobody shop, exposed to all sorts or chemicals. That's what I believe caused my disease. Started working in the shop when I was about 15 years old.

#4 Amanda Thorpe

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Posted 09 June 2015 - 11:27 AM

Well now, I am 47 so outside the target range for replies but hey-ho here goes! 

 

A speeding car screeches to a sudden and abrupt halt at the side of the road. The door opens, without warning, I am ruthlessly shoved out and land in a sprawling heap. Wheels spinning, such is the hurry of its departure, and the car is gone. I wait and I wait and I wait until I realise that no one is coming back for me. Still, my gaze searches every passing car hoping for that spark of mutual recognition. Surely the car will return for me, the occupants perturbed by my absence...NOPE! Long gone, all gone they've moved on!

 

That's what diagnosis was like for me. The life I had been living for 39 years died but the body I inhabit did not. Scleroderma tossed me outta the speeding car, dumped me at the roadside and everyone else I had been "travelling" with continued on with their journey, apart from my husband because his life was also shattered beyond recognition. I don't think anything could have made my diagnosis more painful than it was, my age was certainly no buffer to the loss of my career, ability to ever earn an income, mobility, independence, the future I had anticipated, friends, relatives, status, value. I could go on but I won't. Did I mention that I was diagnosed on my 10th wedding anniversary and the bottle we cracked open was commissatory not celebratory as we had planned? Oh, and I saw a film about a woman who dies horribly from scleroderma a week or so before diagnosis so that when the rheumatologist said the "S" word, I thought I would then star in my own crash and burn movie. Well, I kinda did!

 

I tell you something for sure, you couldn't make this stuff up and you couldn't make up a more bizarre or difficult disease to have. "You have what? Sclerra what's it you say?" Yeah, right!

 

Take care one and all and I'm mighty glad to find I'm not the only one curbside!


Amanda Thorpe
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#5 quiltfairy

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Posted 09 June 2015 - 01:36 PM

Great analogy, Amanda.

I know just how you feel. I was once an owner operator of a semi truck going down the road happily then life changed all of a sudden. I am now on disability doing nothing. I have no energy to do anything most of the time.

#6 Ron

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Posted 09 June 2015 - 01:48 PM

Amanda,

 

You have a way with words.  Do you write for a living?



#7 Margaret

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Posted 10 June 2015 - 10:20 AM

Hi Grey Pilgrim,

 

I usually chime in for my son. He's 27 years old now and was diagnosed at age 18.  Initially, it was pretty bad.  His symptoms were all internal, no skin issues.  His main problem now, besides fatigue and chronic leg pain, is his esophageal dysmotility.  The gastroenterologist said his esophagus now looks like a silly, curly straw, so contorted from the hardening.  He has to *wash down* his food with liquids during meals. He was put on Plaquenil shortly after diagnosis and hasn't had any major flares.  His disease seems to be moving very slowly, even though he has also been diagnosed with Rayauds and Sicca since going on the Plaquenil.

 

Take care, Everyone.

Margaret

Mom to Gareth, 27 years old, DS/ASD



#8 Amanda Thorpe

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Posted 13 June 2015 - 01:24 AM

Quiltfairy

 

Let me be a massive geek and saw "How cool!" that you were a truck driver! As a kid, I would stand with my friends at the side of the road trying to get the 18 wheelers to honk at us and they usually obliged. We thought it was a total blast! Nice to know (in a completely selfish, it's not just me kind of way) that I'm not the only one busy doing nothing. We should start a club! As it was your idea you can be Prez and I'll be Vice Prez. Members will be required to sleep on average of 15 hours a day, any less is unacceptable as we won't have no light weights dragging us down!

 

Take care.


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#9 Amanda Thorpe

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Posted 13 June 2015 - 01:27 AM

Thanks Ron. I would love to write for a living but I've never had the discipline and in addition, I now can't stay awake long enough to really "do" anything much. Oh, I have such grand plans, if only I could fulfil them! Maybe one day.

 

Take care.


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#10 quiltfairy

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Posted 13 June 2015 - 09:37 AM

:lol: :lol: Amanda.



#11 Trinity

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Posted 18 June 2015 - 08:08 PM

Hello. I was diagnosed with rheumatoid arthritis at 12 and scleroderma at 13. I am now 29 years old. I didn't meet anyone else with scleroderma until my brother's girlfriend's mother was diagnosed a few years ago. I was too scared to research because I had no idea what applied to me and what didn't. Fortunately I have localized scleroderma, but it has still resulted in the loss of function to my hands and I've had non-healing ulcers for over 8 years. I am new to this site and look forward to meeting others who have gone through this and to learn about possible treatments I could use.

Trinity

#12 Shelley Ensz

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Posted 19 June 2015 - 07:59 AM

Hi Trinity,

 

Welcome to Sclero Forums, I'm very happy you've joined us.

 

I'm a little confused by your post, because you say you have localized scleroderma (which is like morphea, linear, en coup) but your description sounds more like limited systemic sclerosis, because of it affecting your hands and causing digital ulcers, and also because of the RA, too.

 

Since it is extremely easy for all of us to mix up the words limited and localized, I thought I'd better check before running off my mouth in the wrong direction.  :dont-know:

 

See Types of Scleroderma.

 

I look forward to hearing lots more from you.

 

:hug-group:


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#13 Trinity

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Posted 19 June 2015 - 09:01 AM

Hi Shelley,

Truth is I'm not 100% sure of my own diagnosis. The doctors never used the words localized or systemic. I didn't even know there were so many categories within the two. It wasn't until yesterday that I'd had a doctor suggest my vasculitis issues might be connected. I just thought the ulcers were connected to weakened and damaged skin. I have never had Raynaud's. I've never really been to a doctor who knows scleroderma before. Yesterday's doctor has experience with scleroderma ulcers, but I don't know how much she knows about the disease overall. She may only be assuming my arteries are affected. I will try and look at the definitions here and will be careful about future claims. It's a bit scary to realize it may be a form of systemic. I need to learn more as this doctor also believes it's in my best interest to amputate both feet. I need to be sure I understand the disease before taking such a drastic step. Thank you for asking for clarification. It lets me know I need to clarify. I just don't know where to start.

Trinity



#14 Joelf

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Posted 19 June 2015 - 10:25 AM

Hi Trinity,

 

Welcome to these forums!

 

I'm sorry to hear that your ulcers are so bad that amputation is being considered. As your symptoms are obviously painful and unpleasant, I would suggest that you consult, if possible, a Scleroderma expert as this complex disease does require specialist expertise and knowledge to deal with all it's little idiosyncrasies.

 

We also have a page on Vasculitis which I hope you'll find helpful and informative as well as extensive medical pages on every aspect of Scleroderma and Autoimmune diseases.

 

Now you've joined our community, please keep posting and let us help you with any queries you may have.

 

Kind regards,


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#15 judyt

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Posted 19 June 2015 - 04:40 PM

Hi Trinity,

 

It seems to me just as well you have found our group and you are setting about to educate yourself.   It is one of the main problems for us with this disorder, that it is so rare that very few doctors or ancillary people know what they are seeing.

 

I too have had Scleroderma from a very young age and didn't get a diagosis until I went to a Vascular Specialist about ankle ulcers in 2003.   I am now 71 and because of the difficulty in getting a diagnosis I have quite troubling internal organ damage.

 

The thought of amputation before you even have a proper diagnosis and have tried some of the medications which are now available, is very worrying.   Of course Gangrene is a dangerous condition and if your feet are at that stage it is very important to get experienced advice at the soonest possible time.  

 

Please do what you can to get to a reputable expert at the first opportunity.

 

Best wishes

Judyt



#16 Trinity

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Posted 19 June 2015 - 09:27 PM

Thank you all for the welcome. I definitely want an answer about my diagnosis before I go forward. The thought of amputation was more to keep me from losing more years to pain, more than any immediate concerns. I spoke to a leader of the support group I recently joined and she is going to help me get an appointment with a doctor who knows the disease, even if he is not classified an expert. She will also help me know what to ask. I am really glad I found this site because I was ignorant to just how ignorant I was. I look forward to learning more, meeting people, and sharing my journey here.

Trinity

#17 Shelley Ensz

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Posted 02 July 2015 - 08:52 AM

Hi Trinity,

 

I'm glad you've found us and that you now know how much it is you don't know. This is one disease where self-education is absolutely vital to know even what questions to ask your doctor.

 

Sometimes they just need to mention that amputation is a potential "treatment" on the horizon. They are especially likely to bring up that topic if you are doing anything at all that could be making your illness worse, such as smoking, alcohol use, caffeine, street drugs, not avoiding cold and keeping warm at all times, not properly managing blood sugar, high stress, medications with vasoconstricting side effects, or not following all of their instructions.  I've known people who have had several amputations before making necessary lifestyle changes, and then again, some never do.

 

If by any chance you are not following *all* of your doctors instructions to the absolute max, then amputation might be a very high likelihood, especially when combined with any type of scleroderma. Our rule of thumb is that whenever any of us are inclined to be noncompliant or self-destructive, it is a good idea for us to start (or continue) counseling to learn tools and techniques for enabling self-love and establishing and reinforcing new and better habits.

 

Most unfortunately, with some illnesses, including scleroderma, it is possible to do absolutely everything right, and still suffer amputations. Sometimes people get discouraged by that idea, and take it as meaning they shouldn't even try. But of course, surrounding yourself with great support and encouragement to be as healthy as possible under the circumstances, and getting the best medical advice possible, can make a world of difference and at the very least keep unavoidable damage to a minimum.

 

Please continue to find the specialists that you need to help address your health concerns, and the support you need along the way.

 

:hug-group:


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#18 Amanda Thorpe

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Posted 02 July 2015 - 10:11 AM

Hello Trinity

 

What's the phrase, knowledge is power? Or how about, know your enemy? Take your pick!

 

It does help to know your disease and boy is it a confusing one! It took me ages to get the gist of the different types blah, blah, blah and then the symptoms, a never ending list of potential disasters, which would I have, which would I dodge and so on. I found asking questions and reading this forum, as well as the site itself, a user friendly way of picking up information.  

 

Please post your questions as they arise, enjoy the site and we look forward to getting to know you better.

 

Take care.


Amanda Thorpe
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