Meet Me in St. Louie with Global Genes: My Experience at the aHUS Meet-Up
June 19, 2015
As soon as you arrived in St. Louis this weekend the air was hot and sticky and there were nothing but a sea of red shirts everywhere!
Because you were in St. Louis in June and the Cardinals had a home game! Which we won by the way!!! Go Cardinals!!!
But for about 30 of us, we were not there for the game. No, we were there for much more serious reasons, but like the Cardinals, WE ARE WINNING!!!! We are survivors of aHUS. Many of us are just starting our journey with this complicated disease and others are running the bases and making home runs! But we are all in it together and WINNING!
I’ve been to many meet ups and events of the aHUS community and I gotta tell ya, I learn something new….many things each time! So if you’ve never been to a meet up, come join us. If you’ve been before, keep coming back! Science and medicine is really making strides with our disease..new discoveries and new ideas are learned at every single meeting. I cannot stress this fact enough.
Carrie Ostrea,a leader at Global Genes, does a fabulous job of taking our ultra rare disease and teaching us how we are a part of something bigger, the rare disease community. And we aHUS folks are lucky! Only 5% of rare disease have a treatment and we are one of them! God bless Alexion! Thank you, Carrie, for what you do! Like us all, I know you would prefer to be oblivious to rare diseases but God has given you such a gift and you lift us all up when you speak!
The one source nurses from Alexion share their information on what exactly they can do for us patients and let me tell you, they have hard jobs– but they do it with such grace, love and compassion for us. They fight insurance battles and whatever other struggles we may encounter. Thank you ladies! Not sure what we would do with out y’all!
Maya Doyle! What a plethora of knowledge! Best social worker I’ve ever met! She truly gets us! She understands not only us but what our families feel. And helps us put strategies in place to navigate our lives as they are now, with aHUS. For me personally it’s definitely been a new normal I’ve had to define. But it’s working! She is such a valuable asset to our group.
Cheryl and Bill Biermann, founders of the aHUS foundation did a great job of sharing their knowledge and resources and how the foundation can help us in our journey of aHUS. But their son, Nathan…..he is a walking miracle and such a pleasure to meet! I can’t wait to see what God has in store for this young man. Remember that name, Nathan Biermann.
So that brings me to Dr. Bradley Dixson of Cincinnati Children’s Hosptial. I was so blown away and impressed with not only his understanding of aHUS, but how he was able to relate to us as patients. Breakdown the (ever complicated) complement system and how aHUS works on the molecular level. He was so approachable and kind and answered questions as he spoke. Truly a world class doctor! It was a real treat to hear his presentation and I hope to hear him speak again someday!
To me these meet ups are truly family reunions. Sometimes I see people I’ve met before in my aHUS family but I always add more members to my family and that is very comforting. I pretty much went through my journey alone until finding Alyssa! And now my aHUS family is way bigger than my biological family!
In closing thank you to Alexion, Global Genes, Onesource and the aHUS Foundation for making events such as these available to us! We are a growing group of rare individuals but have so much support from all of the aforementioned entities. Where would we be without y’all? I don’t even want to find out!
Great weekend in STL
Cards keep winning, because aHUS warriors are gonna keep winning!
Sign up for updates straight to your inbox.