Thank you for the geat info. I'm newly diagnossed SSc and have been battleing with food and its affect on my gasto and reflux. Scared but not giving up.
Sorry you're scared Mike, we know it can be really overwhelming. Hopefully this video helped point you in the right direction for some foods to try out and avoid to see if that affects your symptoms. Do get in touch if we can support you in any way.
Thank you for this video. I can now discuss the issues with my Rheumy as she's already admitted that GI issues are not her strong point. Stay warm everyone, much love Dr? Volkmann
Help please I've been suffering everyday my life is hell ...the doctor haven't detect it yet but I'm sure I have this it is affecting my breathing and my GI my kidneys...I think I have MCAS as well...histamine issues,malabsorption,oxalate,etc.... What are the treatment available that don't destroy our system....I have neural issues and spasms I can keep going like this I try to be strong but this is awful way of living
Sorry to hear you're having a hard time. Here's some information on the steps towards getting diagnosed with scleroderma - it might be worth asking your doctor to refer you for these tests. www.sruk.co.uk/scleroderma/scleroderma-getting-diagnosed/ As for treatment, there are some varying options. This page goes into a bit more detail so that if you're diagnosed with scleroderma then you'll have more information on which treatment route might be best for you: www.sruk.co.uk/scleroderma/scleroderma-treatments/ Hope these are helpful, and do let us know if we can support you in any way.
Will eating better slow down or stop SS because I keep seeing things about MS being treated but not SS, mother was recently diagnosed but has had the symptoms for 10 years atleast. She had a GI problem that made her look 9 months pregnant for like a year until it just stopped randomly. They knew she had auto immune disease and lupas but we’re dumb enough to not check for schleroderma so can anything help her or does she have a clock ticking?
This is a month later but may help. I had lupus for decades before being diagnosed with SSc. It’s often missed because it’s fairly rare and many rheumatologists don’t have experience with the symptoms as many overlap with other autoimmune illnesses. My diagnosis was 6 years ago and I’ve learned to manage fairly well.
The best information I have had on this issue.
Thank you for the geat info. I'm newly diagnossed SSc and have been battleing with food and its affect on my gasto and reflux. Scared but not giving up.
Sorry you're scared Mike, we know it can be really overwhelming. Hopefully this video helped point you in the right direction for some foods to try out and avoid to see if that affects your symptoms. Do get in touch if we can support you in any way.
Thanks a lot, enjoyed this and very informative
I hope scientists can create a medication to stop the extra collagen production, and that causes fibrosis. 🙏🏼🙏🏼🙏🏼🙏🏼
🥺
That would be brilliant, Lilly!
@@WeAreSRUK That's s need!! We're suffering!!
Great presentation. Not boring and straight to the point. Good suggestions. 👍🏾
Thank you! We're so glad you found it informative :)
Thank you for this video. I can now discuss the issues with my Rheumy as she's already admitted that GI issues are not her strong point.
Stay warm everyone, much love Dr? Volkmann
So glad you've found this helpful! Hope the discussion went well!
Really useful information thank you!
So glad you found it helpful Anyoli!
If FODMAPS are mostly processed foods , fruits and veg. How is a plant based diet supposed to heal?
Very interesting. Thanks 🌻
Glad you thought so Paola!
Help please I've been suffering everyday my life is hell ...the doctor haven't detect it yet but I'm sure I have this it is affecting my breathing and my GI my kidneys...I think I have MCAS as well...histamine issues,malabsorption,oxalate,etc....
What are the treatment available that don't destroy our system....I have neural issues and spasms
I can keep going like this I try to be strong but this is awful way of living
Sorry to hear you're having a hard time. Here's some information on the steps towards getting diagnosed with scleroderma - it might be worth asking your doctor to refer you for these tests.
www.sruk.co.uk/scleroderma/scleroderma-getting-diagnosed/
As for treatment, there are some varying options. This page goes into a bit more detail so that if you're diagnosed with scleroderma then you'll have more information on which treatment route might be best for you:
www.sruk.co.uk/scleroderma/scleroderma-treatments/
Hope these are helpful, and do let us know if we can support you in any way.
It’s is an awful way of life but my prayer is a quality of life be restored to you as well as myself.
Blood tests are the way to narrow it down and the noticing foods that make you ill. The test is ANA. Sending you blessing and healing
Will eating better slow down or stop SS because I keep seeing things about MS being treated but not SS, mother was recently diagnosed but has had the symptoms for 10 years atleast. She had a GI problem that made her look 9 months pregnant for like a year until it just stopped randomly. They knew she had auto immune disease and lupas but we’re dumb enough to not check for schleroderma so can anything help her or does she have a clock ticking?
This is a month later but may help. I had lupus for decades before being diagnosed with SSc. It’s often missed because it’s fairly rare and many rheumatologists don’t have experience with the symptoms as many overlap with other autoimmune illnesses. My diagnosis was 6 years ago and I’ve learned to manage fairly well.
Have her get an ANA test. If she is positive have them run a full test (mine was 12 items) to help identify which type she has.