Eley Family

I am the caregiver of my 4 family members who suffer from this disease. My husband and our 3 daughters were diagnosed in 2013. Their treatment is in our hometown of St. Louis, MO. It spins my mind how this disease starts so simple but is far from that. It is so complex it takes MANY physicians and persistant caregivers to stay on top of things. Just when you think you are ahead of it, something else pops up. 3 of my family members have had surgeries. It's impossible to not constantly think about what's next, or worry about every ache and pain. Trying to keep up with that and the other side of life is exhausting. We say "just because its a tumor doesn't mean its cancer". We went down the cancer road 1997-1999 with our oldest when she was 2. But having extensive testing and frequent procedures and surgery deserves regonition and is still life changing.

We have been to 1 meeting with AMEN, and there is so much inspiration from all that work so hard to get the patients and their families the education and resources needed to survive. The dedication to research is key to future treatment and screenings needed to help patients all over the world. There is so much to do it's a blessing to have Linda and Dr. Lewis as the leaders of AMEN. When I found them, it was like being connected with a long lost family member. Finally be able to talk to real people that could talk about this at my level.

The lasr 3 3 years have been rough, and I hope to find local people to also connect with.