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I'm 42 & just received my official diagnosis of limited scleroderma. doctors say I've most likely had a mild case since childhood, but now my hormone change is triggering progression.

 

I have a 19 year old son who was diagnosed with a genetic immune deficiency when he was 5. His immunologist says it's unrelated to my sclero. My rheumatologist, who seems to be a genetic specialist, says they are most likely related, that we may both have a genetic factor that makes us succeptible for immune issues, but due to environmental factors, ect. we manifest differently.

 

I'm vegan & into animal & earth rights. Been wanting to get rid of my car & start biking, but finally gave up & got a diesel car & had a waste vegetable oil (WVO) tank installed. Now I can get dumped oil from restaurants, pour it in my tank & spew out minimal pollution. Since I have my Master in Education, I'm considering offering presentations to classes on transportation powered by WVO.

 

Of all the symptoms I've had, the one that's throwing me for a loop is hip bursitis (whether this is sclero related, who knows). That's why right now as I type I'm sitting on an exercise ball. I even replaced my office chair with one too. Night & day difference. But the thing that's helped the most with this is stretches I learned at physical therapy. I'm the ultimate skeptic, so after my doctor gave me the referral I refused to go. But after a few more days of pain & no sleep, I caved, & really it's turned my life around.

 

The thing that hurts emotionally even more than my diagnosis is my parents reaction. None. I've had issues with my folks my whole life, but I thought they would at least express some words of care. When I was 20 they disowned me when I discovered I was gay. Their reaction now is flashing me back to that time of raw parental rejection. So on top of dealing with this diagnosis, I'm going to be dealing with their rejection again. I don't understand it, as a mother now I can't even imagine rejecting my child like that. I want to forgive & move on, but it's just so hard. That's why this forum means so much to me. You're almost like my adopted parent - always there, 24/7, always a caring word, except you also have the added benefit of your expertise. Thanks for being there for one & all.

 

Peace from Seattle,

Satya or VEGAN

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Hi Satya,

 

I'm delighted that you have joined Sclero Forums, but very sorry that it is because of your recent diagnosis.

 

Way too many of us know what it is like to not have any acknowledgement or acceptance or understanding of our diagnosis from family, friends, co-workers, and even doctors. I was totally dismayed by it when I was first diagnosed. I think a huge reason for it is that people simply do not respond the way we think they should or would, when it comes to illness issues. Although another big factor is the lack of awareness of scleroderma. Most people have no clue what it is, how serious it can be, or anything.

 

But most of us here know what it is like to be ill, and to encounter less-than-ideal responses. I know it hurts particularly bad when it comes to parents. Try to keep the focus on your own life and your wonderful activities and interests, since those who don't undertand will only serve to drag us down. And that is the last thing any of us need!

 

Warm Hugs,

 

Shelley


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.

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Hello!

My name is Jennifer and I am 40 years young. I have systemic sine sclerosis. I was diagnosed in 2005 but have had symptoms for at least 10 years before that. There was never much concern because the lung disease hadn't kicked in yet and I had no skin involvement, so all that time we just thought it was random sypmtoms that were treatable. Finally when the lungs became a problem, is when I went to the hospital. It took 3 weeks of being in ICU for the doctors. to figure out the problem. I have interstitial lung disease. I've been on disability ever since the diagnosis so I am a stay at home something. I am a newlywed and we have two adorable dogs that, in our eyes, are our kids. It's fun and it works for me!

 

A little about me...I was a hairstylist for many years, but retired as a deputy county clerk, as records manager. I am originally from Fayetteville, AR and grew up in Aspen, CO. I currently live in the mile high city, Denver! Some of you may know it as Bronco or Avs country.

 

I take Cellcept and several other pills to get through the day :). Cellcept seems to be working it's magic. The supplemental oxygen I could do without.

 

I am sure there's more to tell, but that's enough to bore you for now.

xo

Jennifer

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Annie, I just joined this forum and was looking around when I came across your first message. I was excited to see someone who lives in Green Bay, has Scleroderma and lung involvement. I to live in Green Bay! I have been recently diagnosed with Scleroderma and I am scheduled to see Dr. M. E. Csuka in Milwaukee in two weeks for a second opinion. I actually was diagnosed with Interstitial Lung Disease a year ago. The Scleroderma symptoms just started to appear in November (Raynaud's). I keep looking for answers and find there are few. I hope you respond to my message. I would love to get to know you.

 

Candace

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Hi Candace,

 

Welcome to the Sclero Forums. I'm glad you are here! I'm really sorry to hear about your recent diagnosis of scleroderma.

 

If there are any specific questions you have, please ask and we'll help you as best we can.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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My name is Jane. I am 43 and have been diagnosed with linear scleroderma en coup de sabre. I have been married to my beautiful husband for three years. Between us we have six kids one boy and five girls. We live in perth western australia, well I say that because that is where my husbands job is based, but we live in a caravan and go where ever work sends us, but only in western australia. so really our home is where ever our caravan is. We like it best when we are near the ocean as we are mad fishermen. we have a boat and like to be out on it as much as we can. Its not as nice when we go inland like we just did, we just came back from doing a job inland in southern cross (near kalgoorlie )for four months. At the moment we are in perth which is great as I have an appointment to see my dermatologist on the 10th of august so he can see how things are going and one of my daughters is also coming with me as we think she may also have the same as me but fingers crossed I so hope we are wrong. Im still trying to deal with this myself and get my head around it and still not really understanding it never mind having to try and explain it to my daughter when I dont understand it myself. But anyway hopefully I won't have too. If there is anyone out there who has the same disease or anyone who has some answers to all the questions in my head, feel free to contact me. So far the only symptons I have is two long dents on my head that go to my hair line. somedays they are both there, somedays theres just one dent, sometimes they feel flat as like they have gone and sometimes they are sooo deep. they can change many times through out the day. Anyway enough of this I only came on to introduce myself but got a bit carried away but it is nice talking to people that know what I have. It was really strange telling my local doctor what I have and he has no idea what I was talking about, so here I am the patient trying to explain to the doctor what I have, it seems weird. I wish everyone well and hope you have a good day.... :)

 

take care

~jane~

 

diagnosis: linear scleroderma en coup de sabre

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So nice to get to know you Satya and Jane. Jennifer, it's nice to read a little more about you, too but it seems like I've known you forever. I look forward to running into all of you in other discussions.


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 I'm new to the forum , so thought I should introduce myself. I live in the UK ( N of England). Have been married 30 years, which is pretty good seeing I threw the wedding ring back at him the day after the wedding! We have 2 sons, both of who have just finshed university. I work full-time and am also doing PhD and don't seem to have much time for anything else, certainly not the house work!

Was diagnosed with Limited scleroderma last year - I was referred to the rheumatologist because routine blood test showed positive ANA and my doctor also thought my hands were a bit cold , and I received a diagnosis within ten minutes of meeting the rheumatologist! Can't get much more efficient than that. Could write lots more but its way past my bed time (its 11.30 pm here) and have to be up for work in 71/2 hours.

lizzie

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Hi, Lizzie, and welcome to the ISN Sclero Forums. I am so glad you found us, but sorry it is because of your diagnosis of scleroderma. It is always good to have another UK member on board. I look forward to reading more of your posts in the forums.


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. I am new here so I will give you a quick summary. I am a 40 year old mother of 2. I have been married for 5 years. I went to my doctor about 6 weeks ago. He sent me to a rheumatologist because he thought I had RA. The rheumatologist took lots of blood and xrayed every joint in my body. He then sent me for an echo of my heart and a pulminary?(lung) test. He has now told me that I have Crest Syndrome. I feel very lost and confused. I really don't know what this is, what it does or what I can do about it. My rheumatologist explained it (sort of) but I guess it went over my head or maybe I just didn't want to hear it. But the things he told me, that I remember, didn't really sound bad, but I have started looking it up on the internet and it sounds alot more serious than he made it out to be. So now I am confused and scared about what comes next. Any help or information I can get will be greatly appreciated.

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Hello Mrs. Zeke,

 

I'm glad you have joined Sclero Forums but sorry that you have scleroderma. As you probably know by now, CREST is also known as Limited Systemic Scleroderma. The only really "limited" thing about it is that skin involvement, if any, is limited to the hands and/or face. But it is a systemic illness and can affect any of the internal organs. Sometimes it is (comparatively) mild and sometimes, not. Everybody is different in that regard.

 

The most important thing is to become an informed patient, so you can take the best care of yourself. Diagnosis usually takes an awful lot longer for most of us, which is not good but at least it usually gives a bit of an opportunity to learn about the illness before being hit with trying to cope with the diagnosis.

 

Welcome!


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.

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Hi

 

I have been diagnosed with Limited SD just 2 months ago this was after approx 14 years suffering from Raynauds & always having a blood test which came back borderline with an autoimmune problem. Well the bloodtest have come back positive & my rheumatologist eventually diagnosed me. I hate my raynauds because I seem to react very quickly to anything remotely cool! I have some facial involvement & possibly my heart. I had a number of tests done & have recently had an Iloprost Infusion however this doesn't seem to have helped a great deal. i have also got Fibro & have had a number of health issues over the last 10 years which now make me wonder if some are related to SD. Still feeling in denial I think & keep thinking it will go away or they've got it wrong. My symptoms are thankfully at the moment mild compared to others on this site but not really sure what it will lead to. Oh and I also don't particularly like doctors, had some bad experiences in the past. Enough of that & onto a bit about my life.

 

I am 52 years old and have been happily married for 28 years & have 2 daughters who have both graduated one in Environmental earth Sciences & the other in History who is also about to go on to do Law. I am a teacher in the UK but have been off sick due to ill health this year but am hoping to return this coming term.

I enjoy walking, photography(still learning), reading fantasy novels and sewing etc.

 

Jen

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Hi Jen,

 

Welcome to the Sclero forums. I'm really glad you found us, but sure sorry it's due to you have scleroderma.

 

Sounds like you have quite a bit going on. You'll find a lot of good information here, advice and good ole friendship.

 

I look forward to knowing you better.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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So glad to 'meet' you Mrs Zeke and Jensue. I believed I spoke to you in another thread, MrsZ, and I look forward to hearing more from you. Jen, this is your first post, but hope it won't be the last. Looks like our UK faction is growing steadily. My symptoms are also relatively 'mild' compared to some on the boards, but the impact on quality of life is all relative, isn't it? I look forward to seeing more of you on the boards. Hugs to both of you.


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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my names jaxs I joined this group in 2006 just after I was dignosed with limited systemic sclrosis, didn't understand wot that was and at times still dont haha, sumetimes I feel very depressed, but I read a lot on this site and has giveing me much hope and courage to get on with my life , and just take one day at a time,

i live in the uk with my 5 kids and beautiful granddaughter, of 3 , i have 1 dog who is huge haha and 2 cats and 10 goldfish, my little boy of 12 has alopicia for 6 years now , but he's got a lillt bit of growth so fingers crossed... i sometimes do feel very not dizzy its like a strange feeling light headed and I fall over , i have to stop driveing at times like that coz my brain dont register traffic lights ...lol sounds mad but as my pals say the mad life of jaxsxxxxx


live life for today and not for tomorrow

 

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