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Any Updates News On Gene Therapy On Hemophilia A ( Factor 8 Deficiency)?
Certainly! Here are some updates on gene therapy for Hemophilia A (factor VIII deficiency) based on the knowledge base:
- Breakthrough Results: A recent gene therapy trial showed promising results… read more
How Do You Prep For Physical Activities To Avoid Injuries? 🏃♂️⚠️
Staying active is important, but safety comes first. Share your precautions and tips for staying safe while staying active. 🏃♂️💪
Comment below with your tips for injury prevention and help others stay safe while being active! 💬
@A MyHaemophiliaTeam Member That’s a great tip! Using knee stabilizing compression sleeves sounds like a smart way to protect your knees, especially with the damage you've experienced over the years… read more
Physical Therapy
I do pilates 2-3 days a week. I also walk 3 days a week. I find this has helped keep the pain in my joints, and all around well-being more positive. My question is: Is this too much?
If you enjoy it, you are not in pain and your levels are good I don't see why it would be too much. I think the stretching walking and strength training helps the joints and muscles
I Have Von Willebrand
Does anyone have chronic pain I have it in neck back hips knees and ankles already have had 1 total knee and 1 total hip replacement
Von Willebrand Disease (VWD) is a bleeding disorder caused by a deficiency or dysfunction of the von Willebrand factor (VWF), a protein that helps blood clot. Here are some key points about VWD:
-… read more
No Dr. In My Area Will Remove A Dust On My Neck. What Can I Do?
Gene, is the cyst causing pain or irritation? If not it might be OK to leave it for now, cosmetic issues aside. Your doc might also be unacquainted with factor replacement therapy and be afraid of… read more
Surgery For Hemophilia Carriers
Has anyone who is a known hemophilia carrier with 50% factor levels had surgery.
My sister is due to have a knee replacement. What was your experience and what did you have to do pre surgery and post op?
Please share your experiences. Thanks
Your sister should coordinate her care with surgeon and Hemophilia Treatment Center closest to her. It may be wise to consider factor replacement therapy or at very leat Stimate.
Are There Any Severe Hemophilia A Women Out There?
My six-year-old daughter has severe hemophilia A, which we all know is extremely rare. So I’m looking to connect with women who are in the same position. As my daughter gets older, she’s starting to ask more questions about her condition and I would love to be a bit more prepared to answer her questions, and share experience from those with first hand experience managing hemophilia as a woman.
My aunt was diagnosed in the 1950’s with moderate Factor VIII deficiency. She is 70 years old now. With the treatments that are currently available your daughter should do very well. You should get… read more
I Am Pregnant And Have A Factor 7 Deficiency. Any Factor 7 Ladies Have Advice For A Safe Pregnancy And Delivery?
You are very welcome! I did have a natural birth but the pain was rough, they wouldn’t give me anything for the contractions. Also, for post birth, make sure they do a follow up on your levels. My… read more
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