I have had this since November of 2020. Still learning. Just healed from very painful digital finger ulcers that dr's are trying different meds for. I'm hopeful of a better future💕
Just found out I have this. Very worried, seems to get worse every day. I have not been treated yet, still working on exactly what it is for sure. But life is now very different and I rather not do it.
well, you'd better treat it as soon as possible, if you treat it earlier, it will slow the progression of the scleroderma and or Raynaud's syndrome a lot ... im diagnosed positive scleroderma by biopsy and ana profile test 3 years ago, im changing my lifestyle and my diet ... i can still drive short distance, but im easily feels tired and sometimes extreme fatique ... take a good care of your heart and lungs, because those two can cause fatality, and also kidney and gastrointestinal ...
@@someonesomewhere1228 It's hard when the doctors don't care at least in my country is like that (México city, México). They don't even care to give a right diagnosis. I don't know what's the treatment or what would be a treatment for this disease. :-(
@@lillyrocks2011 im from Indonesia ... mexico is far better than here i suppose ... im getting better, i improve a lot ... my skin is not hardening anymore, almost back to normal ... my heart and lungs is improving, i can do 30 minutes cardio and drive car on longer distance, everything's been better for me ... i focused on 3 things 1. vitamin D (from sunbath and supplement) ... my vitamin D level was 7, after 6 month treatment improved to 32 2. probiotic, i eat diverse probiotic source to enriched the microbiome on my guts (daily yoghurt, fruits, vegetables) 3. bone broth ... daily bonebroth help me improve my body, slowcooked for 12-24 hour, there's plenty bone broth recipe on youtube ... it contain peptide that can regenerate broken internal part of body ... those 3 makes me improve a lot ... now i only use oxygen 2 hour daily at night, my heart rate and blood pressure is stabil, i can work and play with my daughters ... thanks God ! i struggle and fight to find best treatment for myself, and now im quite satisfied maintaining my condition, it's not perfect back like it used to be, but now im in so much better condition, i had to maintain it, i hope you can improve also 🙏🏻
Hi Cherylene, so sorry to hear that you're struggling. We have lots of resources to help you understand scleroderma & Raynaud's on our site (www.sruk.co.uk) and across our TH-cam. We also have a free helpline on 0800 311 2756 and support groups across the UK. If you'd like to get involved with one of them, email us on info@sruk.co.uk or call 020 3893 5998 and we'll find the one that works best for you. We also have a monthly e-newsletter and social media channels that can keep you up to date with everything that's going on in scleroderma & Raynaud's research and upcoming webinars and events, etc. Do feel free to get in touch if you need any further support at the above contacts too.
Please scientists create a medication to stop the extra collagen production, fibrosis. It causes a lot of damage 😭Please a medication to stop the damage, hardening , fibrosis of the skin. 🙏🏼🙏🏼🙏🏼🙏🏼
Hi I was diagnosed 2years ago with scleroderma.They way I feel is terrible so many times just want to leave my job of fatigue pain in most parts of body ryanards
Thank you for sharing this story 😢
Thanks for sharing. I was just diagnosed as well. Thought I was going crazy with loosing my abilities.
I have had this since November of 2020. Still learning. Just healed from very painful digital finger ulcers that dr's are trying different meds for. I'm hopeful of a better future💕
I yet these horrible ulcers too...what have the drs recommended?
In india ayurvedic path more usefull to scalroderma
And well done you what a fab mum xx
Sending my love I have this xx
Just found out I have this. Very worried, seems to get worse every day. I have not been treated yet, still working on exactly what it is for sure. But life is now very different and I rather not do it.
well, you'd better treat it as soon as possible, if you treat it earlier, it will slow the progression of the scleroderma and or Raynaud's syndrome a lot ... im diagnosed positive scleroderma by biopsy and ana profile test 3 years ago, im changing my lifestyle and my diet ... i can still drive short distance, but im easily feels tired and sometimes extreme fatique ... take a good care of your heart and lungs, because those two can cause fatality, and also kidney and gastrointestinal ...
I hope you have been doing better and getting help.
@@someonesomewhere1228 It's hard when the doctors don't care at least in my country is like that (México city, México). They don't even care to give a right diagnosis.
I don't know what's the treatment or what would be a treatment for this disease. :-(
Hope you're well. Where are you from?
@@lillyrocks2011 im from Indonesia ... mexico is far better than here i suppose ... im getting better, i improve a lot ... my skin is not hardening anymore, almost back to normal ... my heart and lungs is improving, i can do 30 minutes cardio and drive car on longer distance, everything's been better for me ...
i focused on 3 things
1. vitamin D (from sunbath and supplement) ... my vitamin D level was 7, after 6 month treatment improved to 32
2. probiotic, i eat diverse probiotic source to enriched the microbiome on my guts (daily yoghurt, fruits, vegetables)
3. bone broth ... daily bonebroth help me improve my body, slowcooked for 12-24 hour, there's plenty bone broth recipe on youtube ... it contain peptide that can regenerate broken internal part of body ...
those 3 makes me improve a lot ... now i only use oxygen 2 hour daily at night, my heart rate and blood pressure is stabil, i can work and play with my daughters ... thanks God !
i struggle and fight to find best treatment for myself, and now im quite satisfied maintaining my condition, it's not perfect back like it used to be, but now im in so much better condition, i had to maintain it, i hope you can improve also 🙏🏻
I have this prayers
Don't know how to deal with this my life has changed
Hi Cherylene, so sorry to hear that you're struggling. We have lots of resources to help you understand scleroderma & Raynaud's on our site (www.sruk.co.uk) and across our TH-cam. We also have a free helpline on 0800 311 2756 and support groups across the UK.
If you'd like to get involved with one of them, email us on info@sruk.co.uk or call 020 3893 5998 and we'll find the one that works best for you. We also have a monthly e-newsletter and social media channels that can keep you up to date with everything that's going on in scleroderma & Raynaud's research and upcoming webinars and events, etc.
Do feel free to get in touch if you need any further support at the above contacts too.
I am just finding out that I may have this disease, during routine blood tests I am showing positive for Crest Syndrome in 3 different tests.
How are you? Have you been diagnosed?
Please scientists create a medication to stop the extra collagen production, fibrosis. It causes a lot of damage 😭Please a medication to stop the damage, hardening , fibrosis of the skin. 🙏🏼🙏🏼🙏🏼🙏🏼
Hi I was diagnosed 2years ago with scleroderma.They way I feel is terrible so many times just want to leave my job of fatigue pain in most parts of body ryanards
So sorry to hear that Cherylene! We've just replied to your other comment, hope that is helpful!
N ģssa