I am a 26 year old female and I am a new member to the community of Hughes Syndrome, being confirmed with a diagnosis of connective tissue disease only last week after a 3rd opinion I got from a series of experienced Rheumatologists. Ever since receiving the news I have felt confused and lost knowing there is only irreversible progression of my disease. I have currently been put in Plaquenil 200mg/day and have started medication today.
I hope you can give me some kind words of support. My family is based in London, and I was wondering if young adults like myself have been faced with this condition, and how one copes with the knowledge on a daily basis? Also what can my family do to help me? They currently listen to my daily ramblings but no matter how I clearly try to express myself I am reverted back to the initial diagnosis made by my Rheumatologist and it's prognosis which really worries me.
I am currently studying medicine, and my life has really changed, I work hard to battle my symptoms, as well as balancing life around me. My condition does not fall short of anything less than being a trouble and a worry.
Looking forward to your support and kind words.