gene therapy may allow hemophilia patients to go without meds and hemophilia | MyHemophiliaTeam

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Top 10 Search Results for "gene therapy may allow hemophilia patients to go without meds"

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No Dr. In My Area Will Remove A Dust On My Neck. What Can I Do?
A MyHemophiliaTeam Member asked a question 💭
A MyHemophiliaTeam Member

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

Health Insurance
A MyHemophiliaTeam Member asked a question 💭

I live in Michigan, and we have Childrens Special Health, that covers hospitalizations, factor, and supplies, with no cap.
I'm looking to moving somewhere possibly warmer in the future, and I'm curious about coverage in other states. I'm a very special, and severe case, and want to be sure I'll get the coverage that would keep me healthy.
If you care to share, that would be amazing.

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A MyHemophiliaTeam Member

I don't have hep-c but know of some people that does or did. They now have treatment for it.

Elbow Pain - Older Haemophiliacs
A MyHemophiliaTeam Member asked a question 💭

Are there any older guys with haemophilia that are experiencing chronic pain in both elbows. Right hand small finger has pins and needles feeling?

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A MyHemophiliaTeam Member

I have pins and needles in my small finger as well as the next. Xrays shows that I have a nerve caught in the elbow joint. Got used to it after an few years. Now I have Carpal tunnel syndrome as well.

Advice About Hemaphila C
A MyHemophiliaTeam Member asked a question 💭

How is Hemaphila C different from other hemophilia conditions

When Surgery Is Needed , How Do You Get Oncologists/hematologists To Work With Surgeons To Arrange Surgery, Infusions, And Observation?
A MyHemophiliaTeam Member asked a question 💭

I posted an in detail story about what’s happening, but in short. I need multiple surgeries and I am constantly being canceled by the oncologist for numerous reasons (not financial) for some ridiculous reasons such as dates, locations, etc. no referrals or rescheduling, no nothing, just cancels the surgery and surgeons eventually get annoyed and back out leaving me scavenging for other surgeons. Which most once they hear hemophilia refuse to do the surgery because apparently this is a common… read more

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A MyHemophiliaTeam Member

I use to have the same situation. Now I have them contact my hemotologist to set up a treatment plan together. Since I started this method. I haven't been rescheduled, denied, postponed, etc

In Need Of Oral Surgeon In NYC
A MyHemophiliaTeam Member asked a question 💭

Hello. I’m living in NYC can not find an oral surgeon that will do work on a hemophiliac. Any help please.

A MyHemophiliaTeam Member

I like Dr. Mahjoubi. She did my wisdom teeth op

How Do I Discourage My 17 Yro. Severe Hemo. A Son, Not To Buy A Motorcycle?
A MyHemophiliaTeam Member asked a question 💭

.Hi, My 17 yro. Severe A son, is determined to buy a motorcycle. He has written and explained a 3 page report to me and his dad the reasons why he should be allowed to get a motorcycle. To me, this just sounds like the craziest idea in the world.--No exceptions!---A no brainer. But trying to convince my son is a totally different argument
This would not happen right away, but probably within the next 6 to 8 mos
I am searching for help from the "older" more experienced people,-- who may… read more

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A MyHemophiliaTeam Member

I just joined this sight and I saw your post from over 2 years ago. Having had motorcycles since I was 10 made me curious of your outcome. I am Severe A also. Hope all is well. Glenn

Insurance Problems
A MyHemophiliaTeam Member asked a question 💭

Well this is a really long story but I am going to make it short. I have Blue Cross Blue Shield of NC they will not cover my Factor for me to have on hand witch is kinda a big deal. Because I am having to miss work to go get my infusion. They are wanting me to pay a stupid amount of money every month to have it at home at witch point I could buy a new Ford F150 every month lol. But does any one have any suggestions how not to get the run around with them or what I should do

A MyHemophiliaTeam Member

Check with your local Hemophilia Chapter for help with insurance issues.

Surgery For Hemophilia Carriers
A MyHemophiliaTeam Member asked a question 💭

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

A MyHemophiliaTeam Member

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.

I Am A 62 Year Old Senior Who Needs To Have 13 Teeth Removed....
A MyHemophiliaTeam Member asked a question 💭

I am looking for an oral surgeon familiar with Hemophilia in the Titusville/Orlando, Florida. I am a Hemophlia patient (Factor 11) def. and have a tendency to bleed alot.. My dentist said I would need a transfusion before, and one unit after the procedure. So we are talking about a two-three day hospital trip for me. So far, I have no recommendations for anyone close by. Not sure what to do, as the work needs to be done asap because of constant infections.

Any advise would be appreciated… read more

A MyHemophiliaTeam Member

You absolutely need to contact the closest Hemophilia treatment center. I would not ever do oral surgery without the their involvement. I have had 3 surgeries all went well. I have Von Willebrands.