Systemic sclerosis ka dard koi samjhe nahi! Koi treatment batayega?

Yaar, aaj ek aur doctor ka appointment tha. Systemic sclerosis ke liye. Mera diagnosis 2 saal pehle hua tha, tab se har baar same feeling - koi nahi jaanta ye kya hai. Aaj skin tightness bahut badh gaya hai, specially fingers mein. Raynaud ka episode bhi aaj subah aaya - fingers white ho gaye the, fir blue, fir red. Bahut dard hota hai.

Gharwale samajhte nahi. Amma kehti hai "bas tension mat le". Papa kehte "kuch nahi hota, exercise kar". Par ye disease aise nahi hota. Na koi medicine hai cure karne wali, na koi specialist easily milta hai. Aaj doctor ne naya immunosuppressant diya hai, but side effects ka dar lagta hai. Pata nahi chalega ya nahi.

Main sochti hoon, kya aisi rare diseases ke liye India mein proper treatment kabhi ayega bhi? Bahut logon ko pata bhi nahi hota. Mera ek question hai - kya kisi aur ko bhi systemic sclerosis hai? Aur agar hai to aap kaun sa treatment kar rahe ho? Please share karo, bahut akelapan lagta hai.