Systemic sclerosis

[Lo1234]

At the age of six years old, I have been diagnosed with systemic sclerosis. I've had this sickness for 14 years and have been receiving treatment for it. My peripheral veins are in bad state, causing gangrene and necessitating both self-amputation and surgical amputation. I've been on bosenton, tadalafil, and injections of cyclophosphamide 500 mg and mythhylprednisolone 500 mg every one month. My symptoms are not under control, despite using medications like these. I've tried everything to control the symptoms, but they aren't going away. I've lost all of my toes on my right foot slowly. I'm from Nepal, where the health-care system is inadequate and treatment is expensive.Health insurance does not cover my treatment except some like blood tests. The majority of drugs are not readily available and must be imported from out of country which is costly. There aren't enough rheumatologists or therapy options for chronic illnesses like systemic sclerosis in my country. So I'm considering having my treatment in the United Kingdom while also studying. However, treatment in the United Kingdom is prohibitively expensive for me, and because I am disabled (I have balancing problem in my foot, need help for taking shower, difficult to walk) I am unable to work. I come from a poor background, therefore getting therapy for me and my family is quite challenging. Is there anything that could assist me in studying and receiving treatment in the United Kingdom? How will I be able to have my treatment while also studying in the UK? I'm hopeful that if I receive treatment in a pleasant setting, my symptoms would improve.

[lindyanne]

Hi there Lo1234

I am much older than you 👵🏼 i was diagnosed in 2005 and I’m now sixty four so my heart goes out to you at such a young age and for getting through such a traumatic time, your enormous strength comes through in your post and you have my admiration.

I would definitely make enquiries regarding studying here and accessing health care. There are so many specialist centres here in UK for the care and treatment of systemic sclerosis and I hope that you can find a way to get the help you need

Very best wishes

Lindy