I've written a few times about our experience with the Undiagnosed Disease Program. Issac has been followed by a geneticist since he was one year old. When we moved to NC our new doctor had some different ideas and some different routes to take. While getting some information that didn't exactly give us answers we were invited to be one of the first to attend Duke's new Undiagnosed Disease Program. We spent a week there and despite the 12+ tubes of blood taken, issues over an IV for a brain MRI and all the appointments Issac STILL asks when we get to go again!! That's my boy. He loves pretty much any appointment he has to go to and is always great even when he's not happy with them.
I was asked in late 2016 if I wanted to be part of a new PEER group to connect parents, patients and medical staff to help spread the word about the UDN. I was very nervous about flying alone to Boston and meeting tons of people I didn't know, but I really wanted to be part of this group. We all met in January and have had several phone meetings as well as emails passed back and forth. We decided we wanted to put together a newsletter that would be shared with people that have gone through the UDN program. Most parents that have any type of medical issue with their child feel alone and struggle with all the unknowns. We wanted to let people know that we have been through the program and are here to help answer questions or just be a friend for the future. I'm super excited to say that our first newsletter came out this week and can be found HERE. The second newsletter is being worked on as I write as well as additional in person meetings in October and January.
I'm so thankful to all the people involved in the UDN. We learned information about Issac, but yet in some ways we really don't know much still seeing as there have only been 6 people found. Check out the participant pages and see some of the people that the UDN is working hard to help. Our little guy is #5. I think whether you have a specific answer or not you are always worried about your child and their future when there is a medical issue at hand. I'm thankful to all the people that are working so hard to find answers for us all.
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I am so happy that you have been able to connect with this group! It is a great opportunity for both you and Issac.
ReplyDeleteThanks! It's interesting because even with the in person meeting and phone calls I still feel like I don't belong :( I feel like most of the parents have more medical problems than we do and that they struggle more. It's hard for me to feel like I can contribute.
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