I have this, had it for over 9 years & no one around me understands. Developing other conditions (colitis) & the pressure to work, go out & be normal etc is immense. This is a lovely short explanation. It's been a very lonely journey so far. 🙏🙏🙏🙏🙏🙏 Thankyou.
Sorry to hear about your problems. How did u get a diagnosis? How do go on day to day? I’ve got all these symptoms and have stomach inflammation im from uk nhs is that busy it’s hard work getting problems sorted
@@RichDawson-dw4hg Hi Rich, Sorry to hear that. It's not an easy path when your gut is broken. I'm on instagram if you want to chat. TBH It took me over 7 years of trips to the GP with stomach, toilet issues, reynauds, vomiting all day every day, flu like symptoms etc etc. It was thanks to a locum who asked why no one had followed up as I had blood markers for it. I was already with the gastro department at the hospital & am shocked they didnt pick up on this. I had been made to feel that it was all in my head but she made an emergency referral to rheumatology. Was diagnosed 3 weeks later. I'm here in the UK too Rich & feel all I do is go around in circles. The PPI's have stopped working & Im choking on bile again (esophageal dismotility etc etc) Best place to start for you if you think its scl is get a full blood panel done. It shows in the blood. Hope your already with gastro? It depends where you live treatment. Here in Bristol I just go round in circles, as complex. Been to A & E twice this month for pain relief but I'm too complex to help. So having a diagnosis doesnt necessarily help. Campaigned to save the NHS for years but quite frankly feel at the mercy of nowadays. Look up SRUK for information. There is so much info on dietary changes and life style tips. They help but was already doing them. Good luck. x
I came over from Jamie Moore’s Easter basket video where she mentions that she is a person living with scleroderma. I wanted to learn about it. Your video was the first one I chose. What a nifty video about a difficult subject. Great information with a touch of humor! The narrator’s voice is quite soothing and the animation is cheeky. I am a new sub and will make my way through your entire inventory. There is much I can learn from you. Thank you (to you and YT # search function!).
@@zofiakowalik9686 mostly yes, but as I live in cold germany its a bit exhausting, you always have to prepare for the weather, you instantly get affected by the cold wind. Also your joints start hurting. When I’m in warm regions like Turkiye or Cyprus the pain disappears directly.
After struggling with Scleroderma for years, I finally tried Planet Ayurveda's treatment. The difference has been amazing! The natural approach really helps, and I can confidently say their treatment is found satisfactory. Highly recommended for anyone seeking relief.
I have this, had it for over 9 years & no one around me understands. Developing other conditions (colitis) & the pressure to work, go out & be normal etc is immense. This is a lovely short explanation. It's been a very lonely journey so far.
🙏🙏🙏🙏🙏🙏
Thankyou.
Sorry to hear about your problems. How did u get a diagnosis? How do go on day to day? I’ve got all these symptoms and have stomach inflammation im from uk nhs is that busy it’s hard work getting problems sorted
@@RichDawson-dw4hg Hi Rich, Sorry to hear that. It's not an easy path when your gut is broken. I'm on instagram if you want to chat. TBH It took me over 7 years of trips to the GP with stomach, toilet issues, reynauds, vomiting all day every day, flu like symptoms etc etc. It was thanks to a locum who asked why no one had followed up as I had blood markers for it. I was already with the gastro department at the hospital & am shocked they didnt pick up on this. I had been made to feel that it was all in my head but she made an emergency referral to rheumatology. Was diagnosed 3 weeks later. I'm here in the UK too Rich & feel all I do is go around in circles. The PPI's have stopped working & Im choking on bile again (esophageal dismotility etc etc) Best place to start for you if you think its scl is get a full blood panel done. It shows in the blood. Hope your already with gastro? It depends where you live treatment. Here in Bristol I just go round in circles, as complex. Been to A & E twice this month for pain relief but I'm too complex to help. So having a diagnosis doesnt necessarily help. Campaigned to save the NHS for years but quite frankly feel at the mercy of nowadays. Look up SRUK for information. There is so much info on dietary changes and life style tips. They help but was already doing them. Good luck. x
@@RichDawson-dw4hg Hi Rich, I typed a long reply but its disapeared into the abyss. You on instagram?
@@RichDawson-dw4hgHi Rich.. I keep replying & it disappears. I'm here in UK. Are you on instagram?
Thanks for this. My mom got diagnosed after 3 years of intense hospital visits when I was 14. It was fairly ‘new’ then and no one knew what it was.
I came over from Jamie Moore’s Easter basket video where she mentions that she is a person living with scleroderma. I wanted to learn about it. Your video was the first one I chose.
What a nifty video about a difficult subject. Great information with a touch of humor! The narrator’s voice is quite soothing and the animation is cheeky.
I am a new sub and will make my way through your entire inventory. There is much I can learn from you.
Thank you (to you and YT # search function!).
I request you to do not stop uploading videos.. I shared this video as much I can.. pls don't stop
What a good explanation god bless you ❤
Excellent video!
im so lucky to find this channel wow
Can you make a video about IBS and IBD, and also about Crohn's & Colitis
Will get there eventually, stay put!
Could you make a video about knee effusion?
just got my diagnose with 25, it started at like 21. Mostly suffering from blood pressure and joints
Hey! How it started? I’m 21 and half is year ago I discovered that I got Scl70
@@zofiakowalik9686 with puffy hands which get worse the older you get
@@el.grantelbart im sorry and also so afraid :( can u have a „normal” life?
@@zofiakowalik9686 mostly yes, but as I live in cold germany its a bit exhausting, you always have to prepare for the weather, you instantly get affected by the cold wind. Also your joints start hurting. When I’m in warm regions like Turkiye or Cyprus the pain disappears directly.
@@el.grantelbart so i did well - moved from Poland to Italy and i feel amazing! I send u a hug🥰
Thankyou 🙏🙏🙏🙏
JazakAllahu khair,,
I am sclaroderma patient.i try ayurvedic in India.my condition is better than day by day.any information for treatment ask me message
Hi wich city in india...can l have the adress..of this place..
From where you took treatment
Plz suggest
Please give me the ayurvedic address
I got my diagnosis at 4yo
Is there a cure?
No. Only deterioration. But after diagnosis, you can live with this disease for 20 years, if you don’t die.
Help
After struggling with Scleroderma for years, I finally tried Planet Ayurveda's treatment. The difference has been amazing! The natural approach really helps, and I can confidently say their treatment is found satisfactory. Highly recommended for anyone seeking relief.
😢😢😢
Looks like a Kurzgesagt animation
Right?
Moore Deborah Davis Larry Harris Paul
Thomas Michelle Wilson Helen Moore Donna
Same problem give me tha ph num