Love this!!! You are a huge inspiration my fellow sclero warrior. Just came upon this video at the perfect time/needed to hear this -so relatable!! Thank you
My Crest Syndrome was diagnosed 6 years ago. Been dormant for 6 years ,it’s back . I can tell my mental state is affected .upset all the time , depression. Perhaps because I am older, got a lot going on . Tons of stress at work . Rheumatologist running new tests to compare from old ones . Was only diagnosed after it was all gone and went into remission.
Thank you so much for this video. I am 65 and have been diagnosed 7 years with limited scleroderma. Most times I do very well and don’t let things get to me but have come to the conclusion that I need to leave my marriage because it causes way too much stress to stay. So I have gone through the process and will be moving to Florida as soon as all the paperwork is completed. I have been in Colorado for 40 years. You have given me a lot to think about. I appreciate your insights and food for thought. Thank you again.
Thank you so much for this..I have been recently diagnosed, its was a shock to say the least. I have been healthy my whole life. I have had surgery already on my fingertip, trying to save the rest of he finger. What a journey this is.
I got diagnosed with systemic scleroderma at 12 years old but I had symptoms when I was an infant. My parents noticed my fingers turned purple in the cold but they didn't think much of it. Later, I started getting tightening of my skin, I was underweight, and I started getting fingers ulcers. My dentist was the one who noticed something was severally wrong with me and suggested to my parents to see my primary doctor. I got referred to a Rheumatologist and after some tests, I was finally diagnosed with Scleroderma. At a young age I didn't understand this change and now I'm 19. I've learned to adjust with this but sometimes I feel depressed bc I feel pain. It's scary that I will have to live with uncertainty. I'm glad I have a supportive family who care for me.
I wish I had an official diagnosis...I should easily be diagnosed (by my bloodwork, secondary syndromes, and my internal damage) with diffuse SCL starting in 2017. Still waiting for a rheumatologist who will LISTEN, LOOK, and take me seriously. Tell me I have terminal cancer with 3mo to live; but don't let me die of a ficticious/unknown condition. I feel like I'm dying, although some things have improved. But I'm so alone...Social worker here!
@@TwoPartyIllusion keep being a pushy son of a gun, I suffered a year of no answers , horrible symptoms and I picked out a surgeon I wanted to see , told my dr want to see him. Took pictures with me of what was happening,held my arm like precious glass, said I think I know what’s happening,he could not help me but got me to a rheumatologist after he himself ran the first tests. Be a thorn and push your way in.
Love this!!! You are a huge inspiration my fellow sclero warrior. Just came upon this video at the perfect time/needed to hear this -so relatable!! Thank you
My Crest Syndrome was diagnosed 6 years ago. Been dormant for 6 years ,it’s back . I can tell my mental state is affected .upset all the time , depression. Perhaps because I am older, got a lot going on . Tons of stress at work . Rheumatologist running new tests to compare from old ones . Was only diagnosed after it was all gone and went into remission.
Thank you for helping me though a difficult time
Thank you so much for this video. I am 65 and have been diagnosed 7 years with limited scleroderma. Most times I do very well and don’t let things get to me but have come to the conclusion that I need to leave my marriage because it causes way too much stress to stay. So I have gone through the process and will be moving to Florida as soon as all the paperwork is completed. I have been in Colorado for 40 years. You have given me a lot to think about. I appreciate your insights and food for thought. Thank you again.
Thank you so much for this..I have been recently diagnosed, its was a shock to say the least. I have been healthy my whole life. I have had surgery already on my fingertip, trying to save the rest of he finger. What a journey this is.
I got diagnosed with systemic scleroderma at 12 years old but I had symptoms when I was an infant. My parents noticed my fingers turned purple in the cold but they didn't think much of it. Later, I started getting tightening of my skin, I was underweight, and I started getting fingers ulcers. My dentist was the one who noticed something was severally wrong with me and suggested to my parents to see my primary doctor. I got referred to a Rheumatologist and after some tests, I was finally diagnosed with Scleroderma. At a young age I didn't understand this change and now I'm 19. I've learned to adjust with this but sometimes I feel depressed bc I feel pain. It's scary that I will have to live with uncertainty. I'm glad I have a supportive family who care for me.
Hi Ron
thank you!
U know I found out I had SCLERODERMA and Lupus 8 years ago. I freaked out. Still bothers me.
Still trying to deal with it
I wish I had an official diagnosis...I should easily be diagnosed (by my bloodwork, secondary syndromes, and my internal damage) with diffuse SCL starting in 2017. Still waiting for a rheumatologist who will LISTEN, LOOK, and take me seriously. Tell me I have terminal cancer with 3mo to live; but don't let me die of a ficticious/unknown condition. I feel like I'm dying, although some things have improved. But I'm so alone...Social worker here!
@@TwoPartyIllusion keep being a pushy son of a gun, I suffered a year of no answers , horrible symptoms and I picked out a surgeon I wanted to see , told my dr want to see him. Took pictures with me of what was happening,held my arm like precious glass, said I think I know what’s happening,he could not help me but got me to a rheumatologist after he himself ran the first tests. Be a thorn and push your way in.