I was diagnosed with Scleroderma in high school at the age of 17. I was also told I had systemic sclerosis. I was told I would not be able to have children, and basically to just accept my fate. Like you I knew God had more in store for me. I have been married for almost 43 years, I have 3 children, and nine grandchildren and I’m still going strong.
My Mom was diagnosed with systemic sclerosis back in 1976 at the age of 35. At first they said that it was an acute form and she would die in 2 months. She waited and prepared but did not die. She lived for more than 20 years with the diagnosis. She might have lived even longer, but we lived in the USSR and a lot of medicines and treatments were not available. Fortunately, my father had a friend who lived in Western Germany and at some point he managed to send my Mom certain hormone-based preparations for treatment. These helped a lot.
I had never heard of it until my cousin was diagnosed with it, following the premature birth of her only child. She fought a hard and valiant battle against this monster until it took her life about 30 yrs following diagnosis. It attacked her lungs and circulatory system so badly, and she was often hospitalized with complications. My prayers go out to anyone with this diagnosis and may new treatments and a cure be found.
Thank you, Bailey! You are a remarkable person, whose courage and wisdom no doubt helps others with Scleroderma...and anyone facing a rare disease or disease of any kind!
When are we going to have a medication for our skin? To control or to stop the skin fibrosis, tightening. This is one of the most strangest, and cruel of the autoimmune diseases. A disease that turns into mummies. Please give us hope. Help us!! 🙏🏼
Hi there love I understand i too have this disease thy told me its limited but my hands are really messed up but i feel better after getting my meds but im scared but also grateful it could of bn worse idk thts how I think ....to know my future i just give it to god i havent bn thru all youve bn there but im still here with you with this disease❤❤❤❤we r family
Thank you for sharing your story. You and your family are beatiful people and it's amazing how you use your passions help pull you guys through the rough times. This educated me on a disease I never knew existed. I'll be sure to share this to others.
I have all the symptoms of CREST but rheumatologist still lists my disease as " unspecified ". She offered no help at all. The Raynaud's is unbearable.
Hello. I have had systemic Scleroderma for about 30 years. This last few years have been the worst. In and out of Hospitals, Doctors appointments over and over, they don’t seem to care at all. And nothing changes anyway. I read a booklet early on from other patients who had Scleroderma, Lupus, or Rheumatoid Arthritis. They gave their stories and they pleaded with the reader to “never do chemo or all the real dangerous drugs doctors pretend might work. They work alright, they make you worse. Now I have Interstitial lung involvement. I have always eaten organic/ non GENETICALLY Modified food. I juice organic greens, fruits. So, I guess the moral to the story is to not to take the poison doctors pretend might help. I never did but know of many, many people who did listen to the lies. They took the poisonous medications and died early on. If anyone would like to hear from me, you are welcome.
stop reading google about you live 2-3 years. you can live a normal life but will be on medication. stick and trust the doctors and seek help! dont ignore it.
I had a girlfriend married with 4 beautiful children. She was diagnosed with Scleroderma. She found and after 7 years slowly she became better. This was in the 1990s.
I was diagnosed with Scleroderma in high school at the age of 17. I was also told I had systemic sclerosis. I was told I would not be able to have children, and basically to just accept my fate. Like you I knew God had more in store for me. I have been married for almost 43 years, I have 3 children, and nine grandchildren and I’m still going strong.
That great I was diagnosed last year before Thanksgiving
My Mom was diagnosed with systemic sclerosis back in 1976 at the age of 35. At first they said that it was an acute form and she would die in 2 months. She waited and prepared but did not die. She lived for more than 20 years with the diagnosis. She might have lived even longer, but we lived in the USSR and a lot of medicines and treatments were not available. Fortunately, my father had a friend who lived in Western Germany and at some point he managed to send my Mom certain hormone-based preparations for treatment. These helped a lot.
I have it too. It's systemic. My skin is awful. My hands are bad. But I'm holding on to God!!❤
I had never heard of it until my cousin was diagnosed with it, following the premature birth of her only child. She fought a hard and valiant battle against this monster until it took her life about 30 yrs following diagnosis. It attacked her lungs and circulatory system so badly, and she was often hospitalized with complications. My prayers go out to anyone with this diagnosis and may new treatments and a cure be found.
Thank you, Bailey! You are a remarkable person, whose courage and wisdom no doubt helps others with Scleroderma...and anyone facing a rare disease or disease of any kind!
When are we going to have a medication for our skin? To control or to stop the skin fibrosis, tightening. This is one of the most strangest, and cruel of the autoimmune diseases. A disease that turns into mummies. Please give us hope. Help us!! 🙏🏼
Hi there love I understand i too have this disease thy told me its limited but my hands are really messed up but i feel better after getting my meds but im scared but also grateful it could of bn worse idk thts how I think ....to know my future i just give it to god i havent bn thru all youve bn there but im still here with you with this disease❤❤❤❤we r family
Thank you for sharing your story. You and your family are beatiful people and it's amazing how you use your passions help pull you guys through the rough times. This educated me on a disease I never knew existed. I'll be sure to share this to others.
I hope a cure or medications to stop the fibrosis, collagen over production can be found.
🙏🏼☀️
I have all the symptoms of CREST but rheumatologist still lists my disease as " unspecified ". She offered no help at all. The Raynaud's is unbearable.
❤️❤️❤️thank you
Hello. I have had systemic Scleroderma for about 30 years. This last few years have been the worst. In and out of Hospitals, Doctors appointments over and over, they don’t seem to care at all. And nothing changes anyway. I read a booklet early on from other patients who had Scleroderma, Lupus, or Rheumatoid Arthritis. They gave their stories and they pleaded with the reader to “never do chemo or all the real dangerous drugs doctors pretend might work. They work alright, they make you worse.
Now I have Interstitial lung involvement.
I have always eaten organic/ non GENETICALLY Modified food. I juice organic greens, fruits.
So, I guess the moral to the story is to not to take the poison doctors pretend might help. I never did but know of many, many people who did listen to the lies. They took the poisonous medications and died early on.
If anyone would like to hear from me, you are welcome.
stop reading google about you live 2-3 years. you can live a normal life but will be on medication. stick and trust the doctors and seek help! dont ignore it.
I had a girlfriend married with 4 beautiful children. She was diagnosed with Scleroderma. She found and after 7 years slowly she became better. This was in the 1990s.