Welcome to our RU-vid channel where we offer information to those affected by Scleroderma & Raynaud's.
We are the only UK charity dedicated to improving the lives of people affected by Scleroderma & Raynaud's.
We exist to improve awareness and understanding of these conditions, to support those affected and ultimately, to find a cure.
To get in touch with us directly please email info@sruk.co.uk and we will do our best to help. Alternatively you can call our friendly team on 020 3893 5998.
Scleroderma & Raynaud's UK (registered charity number 1161828) was formed on 31st March 2016 from the merger of The Scleroderma Society and The Raynaud's & Scleroderma Association.
Please, PLEASE! Try the carnivore diet. It has reversed so many autoinmune conditions in sooo many people. Just give it a try. Many plants don't wanna be eaten so many experts theorize that they have developed deffense mechanisms that hurt us acutely (think peanut allergy deaths) or chronically (like many autoinmune conditions). Do your research and see how many THOUSANDS of people have been healed from all sort of metabolic and autoimmune diseases. Just try it. If it doesn't work, just go back to what you were doing. I know you won't regret it as it absolutely changed my life.
I have it on my upper back I’ve had it since I was a teenager it didn’t bother me as much as it does now as an adult it gets very itchy when it seems to grow and feels like it tightens my muscles when it gets smaller. People have said it looks like a bruise that’s only one area on my back and some days it looks like it covers my whole back just about it’s annoying.
Not necessarily, I survived an almost fatal Sclero renal crisis in 2015, kidneys shut down, lungs filled up with fluid & I coded, in the ambulance..spent some time on life support, 2 months on dialysis, now kidneys function on their own, but it’s not just an early thing, I was in year 6 of diffuse Scleroderma with the Poly 3 antibody
Well I had a bad Reynauds attack last night from picking up cream at a supermarket. I was wearing gloves but all of a sudden lost all my blood to my hands and had to sit at the shop for half an hour until it resolve. It makes no difference how warmly dressed you are. I lose blood while training in the middle of summer. I have tried to find a cure for this too. Just touching cold eggs while I cracked them triggered that a few days ago. I get it from cool breezes too even though I am warmly dressed. I have also been exposing myself to cold and thought it was starting to improve and it suddenly got even worse. It seems to have something to do with estrogen dominance. If I touch cold weights my vessels in my finger burst. I have no heating and I can deal with that for a while and then all of a sudden my temperature drops. I lose blood to my feet while training.
I think we should het tested for more autoinmune conditions. But sometimes doctors want to put everything into the same condition. When we're having more medical conditions, and not only one. When the doctor don't have this on mind, makes it difficult for us, without the right diagnosis we suffer more and we're in confusion. Please don't forget that its so important specific medication/s to control the skin tightening, fibrosis we really really need it! 🙏🏽 Please
What about the connection of the thyroid to Raynaud's? Many people with Raynaud's are also hypothyroid. Can Raynaud's be reversed by restoring proper thyroid function? These seem to be covering up the symptoms of Raynaud's, and I am hopeful for a cure for the root cause of Raynaud's.
How come the usa doesnt take Raynaud's seriously.... I suffer from it badly . My hands , my feet , my nose , my nipples , my knee caps , and my butt cheeks suffer from this so badly i cant live a normal life , even at the beach im cold , im always cold no matter what i do
Have you ever heard of any cases of limited systemic sclerosis being aggravated by physical trauma, such as a fall? I fell backward onto both hands, and fractured my left pinky. The tip of the fractured finger developed painful, thickened skin, like a callus, which I couldn't figure out. Over the next weeks, several other fingers on both hands developed swelling, Raynauds, and ulcers (right index finger severe). In 3 months I was diagnosed with limited cutaneous sclerosis, after never having these issues before the fall.
Thank you for sharing your story, your Mother’s late diagnosis had a detrimental impact, I feel for you all. I too have this and at the moment live for the moment.
It's terrible there's no more medications to stop this terrible disease. (Only immunopresants) but anyway this disease keeps going on, doesn't stop. It's not like Lupus that it enters in remission. Scleroderma continues attacking. 😢 This disease is extremely CRUEL. There's nothing yet to stop the collagen over production, Why? Nothing to stop the fibrosis, Why?? If this disease was cancer a lot of money for researching would be immediately there. We suffer more and everyday , and also with more health conditions ar the same time, like If we had no enough! We have to try to continue with a great lack of understanding , and extreme suffering. It's really terrible. 😢I can't understand how a rare disease like this can exist. I pray 🙏🏼 for a cure and better treatments for the fibrosis of our organs and our skin. (Collagen over production). 🙏🏼
Just listened to Dr, sclederma mentioned but not raynauds. I have, calcianosis on both knees, Have had a lot of falls over recent years. So am assuming trauma related. I have had, raynauds, since age of 27,but has only become problematic in recent years. So basically, I want to know if people without sclederma, just raynauds can develop calcianosis?
Can a topical NitricOxide type creme help salvage damage at skin? And how about hyperbaric or infra red therapies? And what about taking L citrulline and/or niacin, etc, to keep NO at work in these vessels before more damaged? Obviously I am not the authority here, but it seems there are chemicals one can get into the vessels to help at least a little to keep vessels from collapsing/keep them oxygenated.
I’m a 45 year old male. I get PAINFUL PAINFUL nipples when it’s cold. It feels like rug burn with acid poured on. I have a heated vest by Leapsee that saves my life in the winter. A few of my fingers get extremely cold randomly as well.
Thank you for all of this. I can only manage 3hrs of WFH a day. Exhausted, I push myself, never knowing how tired I am until I stop... The pacing and fatigue info is really useful. Vitamin d, interesting. Glad I stumbled across this video. It's very helpful.
I feel your pain 😢I’m a 35 year old male from the uk, developed raynauds after my Covid jabs along with severe rosecea and facial flushing. My nose and hands are mostly affected and then as I warm my nose and face flushes like a tomato. So depressed right now 😔 such a horrible miss understood disease
Dr. Volkmann, thank you for sharing your expertise about gastrointestinal issues with SSc. All your diet and food advice really resonated with me. Very few doctors have the kind of knowledge that you do regarding nutrition, FodMaps, etc., and this will help me in making smarter dietary choices as I traverse my journey with limited scleroderma and sjogrens. Thank you so much!! I wonder what the name of the herbal/spice book is?
I found out I had Raynaud's a couple days ago. I believe how many symptoms and difficulties I have similar to her! Fortunately it's not as bad because I don't have scleroderma. But I'm also 18 which seems unusual because I hear it usually affects women over the age of 50. My grandma has it too. It's painful but manageable.
@30:37 Talking about Doctors communicating with each other... The VERY FIRST thing that needs to be accomplished is accurate and complete representation of the ACTUAL patient/doctor meeting. It seems IMPOSSIBLE for any doctor, even the best I have... to get everything right in the visit summary after the fact! I live in the US in a one person consent state... so I record every single meeting or conversation I have with anyone in the medical field. I promise you, in my case, not one gets it all right, ever. It's sad, the stress on the medical field, the robotic move the cattle through as fast as possible method that seems to exist. I say, something has to give, there has to be a better way... From a very frustrated SSc/PAH patient who 'does doctors' full-time :(
