I just found out that I have Men2a along with my 2 children. They are ages 24 & 21 where their life should just be starting. My daughter has had problems for a couple of yrs. now but no Dr. could find the problem until my father was tested earlier this yr. where he tested positive. My brother is also positive, we are waiting on the results from his 3 children. My life has been turned upside down!!! I find myself crying a lot more and no one to talk to, my friends try to avoid me I think scared of me breaking down in front of them. I'm still working in between the runs to Shands hospital which now seems to be every other week. It is a 5 hour drive for me and has truly become a drive that I don't look forward to. I guess what I'm trying to ask is their anyone out there with this problem?

Report post

3 replies. Join the discussion

I don't know anything about this but I have had thyroid cancer so I know about having my thyroid removed.

There's a lot of information on the internet and I found this particular site informative.

Report post

I just noticed the website Rose posted. If you haven't found the AMEND (Association for Multiple Endocrine Neoplasia Disorders) website, yet, I think you would find it very helpful. They have great patient information books that are easy to read and can be downloaded for free.

If you want to chat privately, my email is


Report post

I feel like it's the end of the world at times. We all 3 go to Shands Hospital on Nov. 14th to set up a surgery date, now I'm having second thoughts if that's the right place to be? My daughter is thinking we need to go to Texas, I'm so confused about all of this. I think my life is crashing down around me.. I'm trying to make the best choices for my family.
I want to Thank all of you for the web sites I need all the info I can get.

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Join our Gaucher Disease Support Community today!

Things you can do

Support Genetic Alliance

Help Genetic Alliance reach its goals and support people like yourself by making a donation today.

Donate to  Genetic Alliance

Join our PNET patient community today!

Join the Cushing's Disease Community on Inspire Today!

Discussion topics

Community leaders