Sticky Blood-Hughes Syndrome Support
8,080 members8,321 posts

Scott: New to Hughes

I really want to thank everybody for responses and help. I keep going back and going over the responses. Still with some brain fog, I go keep going back and taking notes. I am trying the Guetin free, my stomach still swollen but seems a little better so hopefully it will keep getting better. I don't know how long it takes to get better. I ordered that book which supposed to come in tomorrow. I have learn so much from here and to say it best I didn't know how clueless I was until I got here. I found a specialist on a site y'all gave me so hopefully he know more how to treat me. Nothing against my current dr, he just don't know much about it. Honestly I didn't think I would still be alive now six months ago but finally getting diagnosed and Under treatment. Thank god for this site because I have a lot more hope that I can get better with the information that I got here. Thanks again everybody and god bless you all.

2 Replies

Thank you so much for the feedback, we are unpaid volunteers and we do this to raise awareness and also as we at times been in difficult situations ourselves trying to get diagnosis and care in the past. So as we understand what a mine field it can be, we continue to try and help, and of course members on here end up helping each other also. Thank you again. MaryF


I second what my colleague, Mary, has said.



You may also like...