New To Scleroderma

[Rosamylio]

Hello, I have been to 3 different dermatologist and they have done byopcies. Finally got a diagnosis that I have Morphea also known as Scleroderma. They sent me home with not a lot of information and from what Ive read online it scares the crap out of Me. Anyone out there would like to break it down for me??

[uknlv]

I would suggest talking to the people here at RSA and also to ask to be referred to a Rheumatologist that specialises in Scleroderma. It is difficult to break down, as the symptoms and so forth vary from person to person, and as I have said to others take what you read on the internet with a grain of salt. You may never get any of the symptoms you read about. It is best to talk to a specialist and they can start you on your way to treatment and understanding. Best of luck with everything and welcome to the site.

[AshtonRains]

Hello,

I 100% agree with the comment above - do not read anything from the internet. The best thing to do is speak to people on here, as everyone is experiencing Scleroderma in one way or another. If you have any questions, feel free to message me Ashton x

[zenabb]

I agree entirely with what has been said. Make sure you see a rheumatologist and have all the required tests and treatments. There is a lot that can be done. Best wishes.

[Yorky]

You can get a lot of reliable info by getting in touch with the RSA. But I agree with the others, everyone is different, you are unlikely to all the symptons mentioned, and most of it is manageable if you get the proper advice/help.

[Rosamylio]

Thanks for all the info guys! I looked up rheumatologist in my area to make a appointment. I have had this since I was like 10. My Mom noticed a small area on my stomach and took Me to our family doctor and he told her it was just discoloration of the skin like a pigmentation thing. So over the years I noticed it spread ed pretty bad across my stomach, when I got pregnant with my son I noticed I was only carring him on my left side. Well to make a long story short it was a long and painful pregnancy! All 3 of them! Not until I got into my late 20's finally went to a dermatologist and they took 3 biophys and told me I had Morphea. Well no one has any information on this! Its just crazy because I thought I was the only one out there with this. Always covering up my self because it has spread onto my arms and I dont grow hair now on them due to it. Im Sensitive to the sun and Im always tired! Im a at home Mom and my husband tell Me Im aging like him! He has a very hard a physical job! Anyways Thanks again for the Info!

[OXMOAD]

Also scleroderma is so all-encompassing. My sister was diagnosed so many years ago with progressive and was given approximately half a year prognosis to live. She truly has suffered and battled. But here about 7 years later, she is better. Her scleroderma has been "upgraded" I suppose one would say. She has flares where she is down in the bed. But then she has times where she travels and has grand times, works in her yard, does her housework. She is one of my heroes.

She has a great doctor who works closely with her and LISTENS to her. He is very knowledgeable about scleroderma as well. They make a good team.

So you may find yourself at different levels throughout this process. Just keep your chin up and God bless.

[dawng8500]

Although I know that the type of scleroderma you have is very painful, the good news is that it is confined to the skin. I have the type that is classified as "Systemic", meaning that my problems are mainly internal, primarily my heart and lungs. I am often breathless with physical exertion, and must move slower than I use to. I was very frightened when I was diagnosed about 10 years ago, because what I read basically said I had about 5 years of survival. Rubbish! I have a wonderful team I work with (Rhumetologist, Cardiologist, and GP) that work with me, and keep me updated on new discoveries. Do not be afraid; you control your destiny. And keep a positive attitude. The silver lining for me, is that I realized to truly appreciate the small wonders in my life!

[CWats in reply to dawng8500]

Please see a pulmonary doctor for your shortness of breath! You could have the beginning of Pulmonary Arterial Hypertension (basically high blood pressure in the lungs). I am in the process of testing to be placed on a lung transplant list. I ignored my breathing problems for years not making the connection to the Scleroderma. I have what was then called CREST syndrome diagnosed at the age of 26 and given 7 years to live, I'll be 48 next month. In March of this year I was given 6 months to a year. I am so grateful for the time I have been given and quite happy to prove my doctors wrong! I try to keep my spirits up but most days it's a struggle to get out of bed. Thankfully I have a wonderful husband who has taken over the housework and grocery shopping. He makes sure my oxygen supply is plenty, and he still works a full-time job. He also takes care of our grandchildren when they stay. I am truly blessed.

[dawng8500 in reply to CWats]

Thanks, I do. I have regular echos on my heart, and lung capacity tests done. I also take Tracleer, and have for the past 5 years. It has helped tremendously. Unfortunately, this is just the Scleroderma moving forward. I am not on oxygen yet. I suppose at some point I will. As I stated above, I have a good team helping me through. All are "experts" with Scleroderma. When necessary, I head down to Milwaukee, to Froedert's to see Dr. Cuska. For the most part, I am pretty stable.

[Hidden in reply to dawng8500]

I too have systemic scleroderma. I was diagnosed in 04. The raynauds part has been the most troublesome and painful part. Attitude makes all the difference. It's my always adapting new normal. I go to the gym regularly and my girls there keep me quite inspired. Keep up the great work. We are lucky life does go on. My HOPE is increasing!

[Rosamylio]

Thank you for all the wonderful words. I will keep my chin up and keep everything in mind. God Bless you all. And thank you for this wonderful Website =)

[Sienna]

All the information from everyone above is correct. There are several different types of scleroderma. I was diaganosed with systemic scleroderma in 1975 at the age of 27. The doctor told me I had 31/2 to 5 years to live. Well, I am still here 36 years later. I can't say that is has been easy but I lived to see my 3 children grow up, get married and have 6 grandchildren. I found joining a scleroderma support group was very helpful, in fact I was a group leader for about 6 years. If you would like to talk please feel free to write me back. Try to keep a positive outlook on everything, stress is one of our worst enemies.

[Stotts]

I agree with all the above. I am also new to this site but have been diagnosed about 2 years ago. I do not show any signs at this time of Scleroderma but have been told that I do have it. Still learning. This seems like a good source of reliable information.

[CWats]

Check out the scerodermafoundation.org website for great info.

[sueshellann]

Hi - my diagnosis was 30 years ago and during that time I have had many long term ulcers, which has eventually resulted in the lose of 6 fingers and most recently the amputation of both my legs due to poor circulation, the Raynauds part of my illness. Please do not be alarmed this is how it is for me. This is not the norm. Just unlucky.I live on my own and care for myself, I have a good life.

Get a good consultant and take each day at a time, when you feel well enjoy that time, be positive and keep looking to the future. Get GOOD advise, be in charge of this illness. Take care of yourself