Quick Links
About MyHaemophiliaTeam
Powered By
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
Bariatric Surgery And Von Willdebrands Disease
Hello, I was wondering if anyone with hemophilia has had bariatric surgery or any Marjory surgery? I was wondering how the surgery went and if there were any complications? I am considering surgery . Even though I have a very mild form of hemophilia one surgeon said he wouldn't risk it and the other one said it's no big deal?. I was just looking for advice from others who has been through it and the out comes..
Sorry, I know it's been awhile, and you may have had your procedure already. I have had extensive surgeries done, and with preplanning and my HTC doctor's orders in place, I have not had problems… read more
Big Bruise To Forehead
Hi, my 3 year old son has moderate hemophilia, level 3.
He had a nasty bruise on his forehead that has swelled up to a golf ball size, and has rebled a little.
Apart from trans acid, is there anything any of you guys have used to stop the bleeding and support recovery?
We are very worried
Thanks so much
David
For a big bruise on the forehead, especially in someone with hemophilia or a bleeding disorder, it's important to take specific steps:
1. Rest: Avoid using the injured area
2. Ice: Apply a cold… read more
Blood Types?
I am curious, my husband has O negative blood and his friend also has negative blood. These are the only 2 hemophiliacs I know. I was wondering if there is a correlation with negative blood and hemophilia? Also, my husband has a MTHFR mutation, which makes his body less able to detox, among other things. I do not know about his friend’s status on this, but we found out through 23&me and genetic genie. Does anyone else know their status as far as blood type and/or MTHFR mutation, specifically 677… read more
Interesting question but I don't believe there is any connection between RH factor and hereditary bleeding disorders. Like you, I am O-neg. but that only means we are universal blood donors (like… read more
For Those With Children In College Or Heading To College, How Did You Handle Sending Medication With Your Child And Informing The College.
I am sure it depends on what prescription coverage you have, but if for example you use CVS, you could ship your child’s meds and supplies to a CVS pharmacy in the area, and your child could pick it… read more
If Possible, Have Your Child Attend A Hemophilia Summer Camp To Meet Others With Our Condition, Learn Basic Facts And Build Community..
Nowadays in countries with advanced medical care, many hemophiliacs never learn enough about our condition--about self-care and prevention of injury. It is critical that youngsters learn to avoid joint problems that can linger a life-time and cause chronic pain, plus the reasons for and importance of treatment. Not every young man needs to play tackle football or climb mountains. Encourage reading and development of positive social skills, things we all need in life.
I’m Moving To Philadelphia, Pa And Am Looking For Recommendations For A Hemophilia Clinic To Register With. Can Anyone Make Recommendation?
Hi, David. I have been at Cardeza Foundation at Thomas Jefferson for decades. Chris Ramsey
I'm Wondering Does Hemophilia Cause Us To Have More Intense Pain Than Normal People???? My Pain Has Become Almost Unbearable At Times.
Isn’t pain relative to the person that feels it. Since I’ve grown up bleeding I don’t try to compare to a “normal” who hasn’t had regular bleeds. I only compare my pain to myself. So if you are… read more
Doctor Hemophiliac
Who recommend me a good adult doctor for hemophilia in San Antonio my Sinn has been seeing by the children's hospital but is the children's clinic and we are looking for an adult hematology doctor who recommend a good one
I would research you local hemophilia chapter or National hemophilia association or American Hemophilia Association they can recommend and HTC hemophilia treatment center. The hemotology does not… read more
Lawyer For SSI Or Ssd ?
Received SSI until age of 26 then income interfere with it since 2006 been replying use all my work credits and been turn down for SSI they stated my condition has improved how do I go about getting lawyer or help getting this back low income no health insurance has really caused my condition to worsen
SSI is for poor people, SSDI is for people too disabled to work. They both have income and asset requirements. Like you can have two cars or $10,000 in the bank etc. the hemo clinic found me a lawyer… read more
Your Privacy Choices