So cool and over my head

One thing I love about the PHA conference is that they open it to medical professionals and patients and caregivers. It's this giant melting pot of super-knowledge, interaction, and feedback. In one of the dinner sessions, the speaker was talking about something so cool, I barely understand it. So I thought I'd share the microscopic amount I understood in the 30 minute presentation :)

Researchers are studying certain gene mutations on something called bmpr2 (bone morphogenetic protein receptor type II) and it's 33 relations that are located on chromosome 2. They seem to have a big impact on the development of pulmonary hypertension. It took years to find these receptors but now a research team is running four different trials to learn more about the role these receptors play in PH. This could lead to a better, faster, and less invasive way of diagnosing PH as well as a new avenue to explore cures to this awful disease.

Science is so cool! I should have paid more attention in biology....sorry Ms. Myers. 

The conference I attended was through the Pulmonary Hypertension Association (PHA)

The best group of people you never wanted to meet

Community is essential when you are a parent of a child with chronic illness. I was so fortunate when my friend Sophia introduced me to my first PHriend, Monica. Monica encouraged me, hugged me and said "Welcome to the family."

At conference we had a time to get together in support groups. There was a group specifically for Parents of children with Pulmonary Hypertension. My friend Sarah said to the group, "This is the best group of people you never wanted to meet." And it is so true because being a part of that group means that you share with us a huge pain and suffering in your life. But I've also never experienced such a true belonging with a group of strangers than those parents. We live 100s and 1000s of miles apart. An online support group keeps us connected day to day. And conference gives us time together to celebrate, support, and grieve.

In another session, a parent said to use the online group to vent your feelings and get support. Take your emotions there. There is no need to spout that off into your children. It was such a profound yet simple statement. My PH child and other children have no idea the stress and pain I feel so frequently. And they have no business at this age to have to carry a burden like that. They know her heart is special. And that she takes medication to help it work like theirs. And that's why we go to the doctor so much. That's all they need right now. I have a community to help carry of the load of I-can't-keep-it-together-right-now! And for that I am extremely grateful.


The conference I attended was through the Pulmonary Hypertension Association (PHA)