Living Your Best Life 2023 Scleroderma Conference Patient Panel 💙

[@kayh94]

Hi Hannah! I came across your account today and i just wanted to say that you are so inspirational ❤ you are such a positive young woman and definitely living life to the fullest you can. My mum had scleroderma and unfortunately she went on to develop pulmonary hypertension and she passed away at just 60 😢 In a strange twist of fate, my partner of 2yrs has also been diagnosed with scleroderma as well. It’s such a rare disease that it came as a huge shock. I urged him to get checked as i noticed he had quite severe raynauds and after tests and seeing a consult, he was finally diagnosed with systemic sclerosis. Since then his health has deteriorated, he is fatigued, in pain every day, has lost weight, and has had several very painful digital ulcers….all whilst continuing to soldier on into work. He is on nifedipine and hydroxychloroquine. I worry for the future. I hope you can stay as well as possible and your pain symptoms (i saw on another of your videos) settle down. 😊 Xx