Posted 23 March 2008 - 07:05 AM
Posted 23 March 2008 - 09:26 AM
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host
International Scleroderma Network (ISN)
Posted 23 March 2008 - 04:53 PM
I'm sorry to read that your husband has been diagnosed with scleroderma. From you comment, it sounds like it took a while to get diagnosed. Pretty typical for this disease. Is he seeing a rheumatologist?
As Jefa mentioned, there are a few men members that frequent the forums. I'm sure you'll hear from some soon. All of our members are very supportive and willing to share their personal experiences with living with this disease. This ISN site is also full of information that is very helpful in learning more about any symptoms your husband may be experiencing. Just ask anything.
I'm glad that you have joined us. Welcome!
Big hugs to both you and Ted,
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)
Posted 24 March 2008 - 04:11 AM
My husband was diagnosis about 2 years ago. He was 39 and self- employed. It has been a long battle but with modern medicine he has done better than we were first told. I would be glad to talk with you at an time. I fyou will send me a private message, I will give you my e-mail address and any other info. Keep all the positive thoughts.
Posted 24 March 2008 - 06:14 AM
I'm so very glad you've joined us. You and your husband will find this site valuable. It is full of information, support and good ole friendship.
As Jefa mentioned there are several men here on our site, I see a couple have touched basis already. I do hope this is helpful to you.
Posted 24 March 2008 - 05:09 PM
I was diagnosed in 2006 at the age of 43. Although a larger percentage of woman than men suffer from the disease, many men also suffer from Scleroderma. There are certainly our fair share on this site. You have come to the right place. I am sorry that your husband has this awful disease, but be re-assured that new and innovative treatments are being discovered regularly. We have come a long way and I am encouraged that we will see even better treatments in the near future. I have diffuse scleroderma and would be very willing to share my experiences with either your husband or you. One of the things that made this disease easier for me was the support of a wonderful wife and caregiver. Your husband should be very thankful he has you. The support of family goes a long way. Without family and this forum, the road would be much more difficult. Welcome to the site.
Dave in FL
Posted 24 March 2008 - 05:43 PM
That is me in the back of a Limo, this past weekend, on our way to Orlando to have dinner at Emerils. We surprised my father by taking him there for his 75th birthday. My brother surprised him as well by flying down from NJ. It was a great night. Let me recommend Emeril's(Emeril Lagasse from the food network) to anybody who is up for some great grub. I ate way way too much.
Posted 24 March 2008 - 07:12 PM
Just wanted to say hi and welcome to you. So glad you found us! Visit often. Maybe Ted can visit too someday soon?
Looking good! Looking healthy! Hope you feel the same.
Posted 25 March 2008 - 02:42 AM
Posted 25 March 2008 - 03:45 AM
Barbara aka relicmom1
Posted 25 March 2008 - 11:38 AM
I'm BMW (birdmans Wife) he was diagnosed with diffused 1 1/2 years ago. You came to the right place for info. and support. No question is too small or unimportant. Someone will always try to help. Feel free to PM if you want to talk about being a spouse, or if I can help in anyway.
Posted 26 March 2008 - 06:02 AM
Posted 04 April 2008 - 03:41 AM
Welcome from me too! I've been here since November.
Posted 04 April 2008 - 07:31 AM
Welcome aboard....you found a wonderful, loving and supportive site!
It's been my thinking that there are more with Sclero than is reported. I firmly believe doctors treat symptoms one at a time, but when compiled and with a little knowledge, the diagnosis is evident.
I actually had a male schoolmate who was diagnosed in his early twenties and just learned of another family I went to school with in which the brother, sister and mother have begun symptoms of CREST. I myself have had it going on 17 years now but kept it a secret from everyone other than my doctors. I never even told my doctors until certain symptoms clearly made it obvious and there was no hiding it anymore. I think there are a lot that are hiding it too, either out of fear or like me, in denial
Of my three main doctors, my general practitioner had little knowledge of CREST and was getting annoyed in that I couldn't be cured of any minor ailment easily, my Podiatrist who had absolutely no knowledge of CREST and my rheumatologist who obviously was well aware of CREST. My general practitioner and Podiatrist are quite up on the subject now. I even overheard my Podiatrist tell his nursing staff both at the wound care center and at his office to get on the internet immediately and start learning about CREST and Sclero. My Podiatrist had to perform a toe amputation due to a condition started by Raynauds. The nurse at my general practitioner's office asked what CREST was, and I tried to explain. She too, said she was going to hit the internet and begin learning more.
I guess what I'm trying to say, is there are more of us than I think anyone realizes and we're definitely not alone. Take a peek at the Member Map on this forum, which doesn't list all of us, but you'll see we are quite a few all over the states and countries.
What I find the most interesting and comforting is I can share and post with others from all areas of the world! It's amazing. Try the chat room as well. Interesting discussions, swapping of thoughts and a little laughter thrown in.
To you and Ted....
It is what it is...........
Posted 04 April 2008 - 07:59 AM
Welcome - although I think more women have this disease, I think there are probably a lot of men who have it too. To make a long story short, my little sister was adopted when she was 2 and I just found her a few years ago. Her "adopted" dad and I have become friends. My sister was telling me about some weird disease that I had never heard the name of before - and promptly forgot the name as soon as she told me. A year later when I was diagnosed with Scleroderma, it all of a sudden clicked that some of my symptoms sounded like things she had said about her dad although he has diffuse and I have limited. He is doing okay and he is even in his 70's. He has had the disease for about 10 years and when he came to visit two years ago (driving an RV from California to Washington where I live), I didn't even know he had a problem. It was after the visit that I learned what he had. He continues to do well and is thinking about coming to visit again this summer - driving his RV.
This site is awesome - not only because the people are so warm, but they are so full of information and so willing to share.
Welcome and hugs -
Posted 04 April 2008 - 09:49 AM
I am chiming in a bit late, but my son, Gareth, was diagnosed 18 months ago at the age of 18 with sine Scleroderma. It's been revised to UCTD since he was put on Plaquenil last June and improved so much. I was totally shocked and surprised by the diagnosis after reading that it usually affects middle aged women.
Take care, Everyone.