How have any of you been with treatments. The dr. Said they wanted me to try a IV treatment for a few hours and then another day a nose one.
It is an inherited blood disorder. It's important that you find out exactly what blood product you may need if you were ever in an accident or end up in a hospital. You may also wear a medical alert bracelet or have the information in your wallet. See a good hematologist that is familiar with the disease. My daughter has this condition and was important when she became pregnant with both her children.
It’s an inherited blood disorder having to do with protein adhesion. When one parent has the gene, 50% of his children have a chance of getting it too. Looked up on Wikipedia.
Hope that helps. Did you look 👀 on the internet? I’m sure you’ll get the answers you need. Try Mayo Clinic too. They have an answer for treatment and what type of doctor to see.
Best wishes with your journey and I hope it’s not too serious that it’s something you can control with medications. 🌺🦋🙏🤗💐🌸🦋😘
@A myRAteam Member Will keep you in prayer, I never heard of this either. How are you feeling. Youposted this a month ago. xo
Jessica, I have no experience with this. I am going to have to do some research for your newest diagnosis. Praying for you sweet girl and anxious to hear more from you. Remember you are not alone! We are all here for you !!