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#141 epasen

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Posted 01 June 2007 - 09:54 AM

Welll errmm..

I'm a 17 - year - old finnish upper secondary student and I've had linear scleroderma for more than 7 years. It only affects my skin and fatty tissue at the moment, but I'm really worried about it prgressing to the muscle or getting on to new ares of the skin.

Dancing is my passion, I also like to ride, run, got o gym, swim and stuff. My other interests are computers, friends etc.

Everyone else is telling about their children and marriadge which I'm not able to do right now, but I just wanted to say something :) I'm worried and I have a lot of questions and somehow I'm going trough a really hard period with this illness right now, mentally I mean. I just feel like wanting to talk or to SEE someone who would undrestand me, even that my scleroderma is not the worst of the world. (Born under the lucky stars, hah.)

Didididididii, my summer holiday just started yesterday ;D Nice.

Well, I'd like some people to e - mail me if you have ANYTHING to say, I'd like to hear and talk about things :)) C ya

Emmi

#142 jefa

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Posted 01 June 2007 - 10:09 AM

Welcome to the forums, Emmie. :)

No, you haven't yet married or had children, but you are alive and wondering about what is going to happen in your life. There are other young people in the forum - kobi has posted elsewhere that he is afraid of what is happening and would like to have some perspective of others his own age. Louise and Gareth are other young ones and I believe there are others, though my mind is blank at the moment. Dancing is your passion? Good thing, as exercise, stretching, keeping your mind and body challenged and active are all important ways to keep the disease from getting the upper hand.
Warm wishes,
Jefa

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#143 Sweet

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Posted 05 June 2007 - 01:05 PM

Hi Emmi and welcome to the sclero forums.

Sorry to hear you have sclero, but sure glad you are here! I wanted to give you a link to emotional adjustment that might help you a bit.

I really look forward to knowing you better!
Warm and gentle hugs,

Pamela
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#144 Joe

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Posted 06 June 2007 - 07:47 PM

I am 45 years old. I live near Denver, Colorado. I have been married to my awesome wife for 17 years. We have an 11 year old daughter who we adopted at 3 years old. She is doing really great now. We have two black labrador retrievers. One is a rescue dog. He was all skin and bones and scabs all over and had been at the shelter for 2 months and was just about to be put down. Got him from a rescue organization. He is just an awsome dog and is finally all fattened up. I work for a large defense contractor and have been employed there for 24 years. I am a Sr. Computer Systems Analyst. The job is high stress but I love it.

I was pretty athletic until about a year ago. I have Systemic Scleroderma with Kidney involvement. My hands, arms, calves are affected. My gastro is also affected. I seem to have reached a plateau and have actually seen a reversal, a softening in my arms and hope it continues. I found that a distant cousin on my mom's side also had Scleroderma so I think it is related to genetics.

Joe

#145 jefa

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Posted 06 June 2007 - 08:05 PM

Glad to see all of you posting here (Barbara, Craig, Gordon, Sharon, Jess, Emmie, LoriAnn and Joe just on this page). It is so nice to be able to find out a little more about each of your lives. I encourage you to read through from the beginning and get to know the rest of us. Hugs to all and..
Warm wishes,
Jefa

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#146 epasen

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Posted 19 June 2007 - 11:24 PM

Wihii I just came to tell you how glad I am for having summer in Finland right now! It's nice when it's warmer and sunny, oh I love this! I just hope my boyfriend will come back from sailing competition from Germany and bring me some courage to go to doctor to talk about Raynauds and to get me some answers for my questions. I'm also a bit afraid my scleroderma has started to progress again. But if my boyfriend is here it won't matter what the doctors will say.

Have a nice day you all,
Emmi

#147 Rachelle

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Posted 21 June 2007 - 02:51 PM

I havent really posted much about myself so I thought I would here. Im a 34 year old female with two boys ages 16 and 12. I have been married to the father of my children for 15 years and he is wonderful. I am 3 classes away from having a Bachelors degree in Social Services Management. I have been accepted into a Masters program for Counseling. It will start this fall and with my symptoms, Im not sure I will be able to do this. My symptoms started the past Nov with swelling and pain in my index finger hand knuckle. A few months later the skin broke on this knuckle and I have been dealing with trying to get this to heal. It will seem almost healed and then will act up again. I have a history of fibromyalgia and endometeiosis. I have controlled the endo with birth control pills and the fibro is mild most of the time. I am very fearful of doctors and have put off tests, but I have appts coming up.

#148 Lasarina

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Posted 22 June 2007 - 03:53 PM

Hi, I'm yet another Barbara :lol: I'm 45, retired social worker and teacher. I train my dogs and do craft stuff otherwise. My fiancé is wonderful and extremely understanding. Currently, I have a definite diagnosis of restrictive lung disease, fibro, and elevated levels of enzymes that are being checked out. My pulmonologist is about to "duke it out" with my rheumatologist about the sclero diagnosis (I don't have any ANA, and no obvious skin calcinosis). Typical for me - ::sigh:: Stealth disease :(
I am engaged, mother of 3+ (I seem to have inherited all their friends as well - they call me Mamashine) 2 in U of Texas Austin, one graduated and getting ready to go to grad school. I feel like I've been sat on by an elephant with this - so thanks in advance for any advice.

#149 jefa

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Posted 22 June 2007 - 09:20 PM

Rachelle, so nice to hear more about you. Your masters program sounds very interesting. I hope you will feel well enough to handle it. Take good care of yourself in the meantime.



Lasarina, welcome to the ISN Sclero Forums. I can see from your first post that you have two of the most important things you need to fight this illness - a very supportive family and a sense of humor! I hope you will soon find time to get stuck into the other topics as your sense of humor will be welcome. This is a great place for information and support from your peers.
Warm wishes,
Jefa

Carrie Maddoux
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#150 Gaurav

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Posted 24 June 2007 - 05:04 AM

hi I am Gaurav form punjab,India I am also suffering from systemic sclerosis.i love to watch comedy movies specially rowan atkinson,jim carry,read n write poetry,well I love to donate my self for the experiments done to find right medication and cure for systemic sclerosis,

i love to make people happy and this is my only aim of life

Rgds
Gaurav :)

#151 Donna

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Posted 25 June 2007 - 08:14 AM

Hi, my name is Donna :) I was on the old board, but didn't always post a lot - but did get a lot of useful information from everyone's posts. I have Diffuse Systemic Scleroderma - I was officially diagnosed in 2001, soon after officially being diagnosed with AIH (autoimmune hepatitis). 'Some' of my other medical problems are anxiety/depression/panic disorder (which I have suffered with since high school), tachacardia, degenerative joint disease, degenerative disc disease, osteoarthritis, inflammatory arthritis, Fibro, irritable bowel since about 1992 - lets just stop there - LOL........

I am married, am 53yrs old, have one biological son who will be 21yrs in a few weeks and will be a senior in College, and after College is going on to Vet School to become a Veterinarian. I also have a stepson - 29yrs, and a stepdaughter. She is a single Mom with a 19month old boy, and a 2 1/2 week old girl...So, yes, I am a grandmother - kids call me MEM and my husband PAP.........

I no longer work outside of the home - I have trouble working inside the home anymore. As far as my SD - I have a great deal of Gastro problems, from swallowing all the way to bowel problems. I have a lot of problems with my hands - I have never had a full blown ulcer on my hands - but do get the start of them, and am always told by my rheumatologist to immediately put an antibiotic on them and a bandaid for a few days - so yes, I do have the Raynaud's also.......

I have a great deal of joint pain, and also have a lot of trouble with my feet - just like a persons hands curl, the toes on my right foot seem to turn under. And as most, suffer with a great deal of fatigue. My last echogram was normal, my kidney function tests are normal, but have slight pulmonary function reduction.

I take Imuran as my autoimmune drug, because my Gastro first put me on that for my AIH, so rheumatologist says stay on that...

I am from eastern PA - about an hour north of Philadelphia. I see a big decline in myself in just the last year or so in what I can and can not do - either my hands don't work right to do it, or the fatigue level is bad, but I keep on trucking and trying :D

Just recently at one of my scheduled visits with my primary care physician, I told him, I don't get dizzy or anything, but just feel like I am off balance at times - ANYONE ELSE HAVE A PROBLEM LIKE THIS ? I have never fallen or anything, just feels like I 'sometime' sway to one side - he suggested using a cane - I see my rheumatologist shortly so will be discussing it with him - Anyone else ever hear of this being connected with SD??

We currently have FIVE cats :rolleyes: and one older dog - I guess this is what happens when your son works for a Vet Clinic and plans on becoming a Vet himself........

I really think I had the SD longer than I think - I often look at pictures of myself from before 2001, and you can even see on the pics my 'sausage fingers' - it wasn't till I kept complaining of the severe joint pain, that wasn't on weight bearing joints, that I went to a rheumatologist - it didn't take him long to diagnose me once he did the blood work and just looked at me in general.

Well, now that I have babbled on for so long, guess, I should stop.

Any questions, please feel free to ask..........
Take Care All............Hugs........Donna

#152 Margaret

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Posted 25 June 2007 - 02:52 PM

Hi Donna ,

Welcome to the forum. I tried to send this earlier but it wouldn't go through. We live in Lancaster Co., Pa. My son (19y/o) was diagnosed last fall with sine Scleroderma or UCTD....depending on which doctor you talk to. He's got major esophageal/gastric issues, mild restrictive lung disease, vocal issues, fatigue and postive blood tests but no Raynauds or skin issues.......yet. He started Plaquenil June 1 and I have alredy seen positive results as far as him having more energy, *****, etc. Tonight his Dad had a sneezing fit and Gareth said 'bless you' when he finished and a few seconds later he muttered 'not.' That's the kid I want back!!!

Take care, Everyone.
Margaret

#153 bawana

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Posted 26 June 2007 - 11:03 PM

Hi Everyone

Not to sure what to write. This is my first night and I'm totally new to forum. So I guess the best place to start is who I am. My name is Deb and I'm in Alberta,Canada. I have Generalized/Diffussed Scleroderma. I was verbally diagnosis in 82 and went through my testing in 83/84 after my 3rd child was born. I went systemic while I carried him. Never been lucky enough to have a remission yet, but I fight and don't know the meaning of the words "give up" I started a Canadian patient organization in 84 because I knew there had to be others like me out there needing help and info. I am a fighter in the worst way and try to always have a smile. lol like most of us out there ....there are tons more to write about, but I won't bore you with that at this point.

Take Care All hope to chat more in the future. It's nice to see something like this out there, where people can reach out.

#154 Vee

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Posted 27 June 2007 - 04:12 AM

Ok, I guess I've put this off long enough! Here goes.

I'm a 44 year old hairdresser(45 in 2 weeks)Yikes! I've been married to my best friend for 15-1/2 years. We have two girls together and I have one girl from a life long past! The oldest, 21, just finished up her EMT and is currently taking a specialist course. Come fall she will start her Perimedic and one other class will give her an associates in Science. The middle child, 14 in two weeks, is very athletic, plays the clarinet and marches in the high school marching band and is taller than the rest of us. My baby is 12, loves tennis and plays the flute, she will not march for a couple more years. My husband loves the outdoors, hunting, fishing, camping, mushroom hunting, geocaching, you name it, it its outside he's there. He'd have us living in the woods somewhere if I'd let him :rolleyes:

I've been a hairdresser for since '88 and am still working. I was diagnosed with sclero in '98. I like to draw, bicycle, read a good book, chat the on the net with my new found sclero family. I even drove to Georgia to meet someone that I met on these boards this past spring. It was wonderful!

I have 5 brothers, I'm #5 in line. My parents are both still alive, my mother has scleroderma also, and my father is going in for triple bypass surgery in two days.

I can honestly say that having sclero has definitely changed my life, and not all for the worse. I've learned to look at life and people in a whole new light. I truly believe it has made me a better person. I also believe that the power of positive thinking can help you overcome anything that life throws at you! And when you're down, try to find something to laugh at, you'll be amazed at the transformation your body goes through with the feeling that laughing brings about. :lol:

I thank you all for being here when I need you, and it gives me great comfort to know that someone is always here.

I wish the warmest and happiest thoughts to all of you everyday. Even though I don't post much anymore, I'm always here, lurking about.

I'm sure I left out something, but that pretty much sums it up.
Happy people don't have the best of everything, they just make the best of everything they have!

Warm and Happy to you! Vee

#155 artsykata

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Posted 27 June 2007 - 06:19 AM

Hi Everyone! My name is Katrina and I'm from the Philippines. Im 28 years old and a trainer for a company here in Manila. Hmmm.... it was about a month ago that I was able to find this site and it has really given me a lot of helpful information about scleroderma. Most of all, I found people having this illness and are not afraid to talk about it and are supporting one another.... I would like to get to know you all and I'd also like to share our story :)

Truth of the matter is that I am not the one afflicted by this disease. Its my fiance, Ed. Just like most of you it took a year before any of the doctors here in the Philippines was able to correctly diagnose his illness. Ed is also 28 years old, he is a banker and what is amazing about this guy apart from his real big heart is that he is a real good singer as well! My fiance embraces life and the people around him with so much love and enthusiasm.... At this point we stop asking the Whys.... :)

Here in the Philippines Ed had to go through all kinds of tests and a biopsy for the doctors to diagnose him correctly. We sent him to one of the best hospitals with some of the best doctors in the Phil. however, scleroderma was only seen and heard in textbooks until Ed came along --- he was the first real live person that they've seen with the disease... the doctors had to do research and it took about a month or so before the doctors FINALLY diagnosed him with localized scleroderma... yes, we are thankful everyday for the diagnosis... its lesser of two evils :)

Whew... Im running on with so many words.... Its the first time that I actually get to share these thoughts with people who know and are in the same boat as Ed is now... at any rate, I wish to meet you guys and get to share some thoughts about anything under the sun! :)

Before I let go of this litany ---- I am just wondering if there are any of you in the forum who is from the Philippines as well --- would like to know if its just my fiance who is diagnosed with scleroderma in our country....

Nice to meet everyone! :) See ya' all around!

#156 Sweet

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Posted 27 June 2007 - 01:20 PM

Hi Artsykata,

Welcome to the sclero forums. I'm really glad you found us. I'm sorry to hear your fiancee has scleroderma. I hope that you can share the information you find here and better yet, get him involved.

I look forward to your upcoming posts.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#157 Sweet

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Posted 27 June 2007 - 01:29 PM

Hi Bawana and welcome to the sclero forums.

I'm sorry you have scleroderma, but you've sure found the right place! I look forward to reading your posts in the future.
Warm and gentle hugs,

Pamela
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#158 jefa

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Posted 27 June 2007 - 09:28 PM

Glad to see you posting something about yourselves Gaurav, Donna, Bawana, Vee (hi, oldtimer) and artsykata. I look forward to seeing you participate in in the other topics in the forum.
Warm wishes,
Jefa

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#159 sophie

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Posted 28 June 2007 - 04:09 PM

Hi All,

I live in Arizona which is a pretty good place to live if you have Raynaud's with Limited Scleroderma. It was 111 degrees today but my feet and hands still get cold. I was just recently diagnosed and I have so much to learn about this topic..... I am so glad that I found this forum.......I have already gotten so much information. Thanks to all of you for sharing your stories.


Spanky

#160 Sweet

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Posted 29 June 2007 - 04:18 AM

Hi Spanky!!!

Welcome to the Sclero Forums. I am so glad you found us, but sure sorry it's due to your recent diagnosis.

You will find so much information, support and friendship here and we welcome you to the family!

I love AZ! My mom used to live in Tempe.

Looking forward to knowing you better.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)