Hemophilia

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5 medium

Blood types?

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

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A MyHemophiliaTeam Member said:

My oldest daughter is A-, and my youngest is O+. They both have Delta Granule Storage Pool Disorder. We haven't done any genetics testing yet, but we… read more

posted 2 months ago
2 medium

For Mild Hemophilia- females- How do you know when to treat, what symptoms do you experience that you relate to a bleed?

For Mild Hemophilia- females- How do you know when to treat, what symptoms do you experience that you relate to a bleed?

As a newly diagnosed female (former symptomatic carrier without treatment) I am trying to understand what others are experiencing and what advice they are getting. I want to have some background info to bring to my local hematologist and my HTC. Since my diagnosis I have heard some people say treat for pain even without swelling or heat, others say that there has to be visible signs of a… read more

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A MyHemophiliaTeam Member said:

Interesting since I had a total hysterectomy to resolve nonstop menstrual bleeding and now my last factor level was like 120....... I think that is why… read more

posted about 1 year ago
3 medium

Has anyone with Von Willebrands been on a medication that lowers platelet count?

Has anyone with Von Willebrands been on a medication that lowers platelet count?

I am looking at starting a Rx called Nuedexta. It's the one and only med approved for the condition I'd be treating, but it can lower platelet count. My VW's is mild... this condition I'm looking to treat is not... how do I go about knowing if it is safe for me? I've had some incompetent Drs in the past and will not trust any Dr blindly if I can research too.

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A MyHemophiliaTeam Member said:

Very helpful! Thanks!

posted about 1 year ago
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When surgery is needed , how do you get oncologists/hematologists to work with surgeons to arrange surgery, infusions, and observation?

When surgery is needed , how do you get oncologists/hematologists to work with surgeons to arrange surgery, infusions, and observation?

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… read more

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A MyHemophiliaTeam Member said:

I FINALLY got the time to contact my local HTC, after recovering from my last knee surgery. So far it looks like it’s in network with my insurance and… read more

posted about 1 year ago
9 medium

Bariatric surgery and von willdebrands disease

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..

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A MyHemophiliaTeam Member said:

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… read more

posted about 1 year ago
3 medium

I am wondering about fatigue with mild VWs.

I am wondering about fatigue with mild VWs.

My VW is mild, so I have not always given it the credit it deserves in causing complications in my life. But I was diagnosed with idiopathic hypersomnia (non REM narcolepsy) several years ago. I found out a year and a half ago I was misdiagnosed and had iatrogenic hypersomnia caused by an antidepressant. I thought I was completely cured when I stopped taking that medication, and my improvement really is a miracle. But I have always been a little more fatigued than the… read more

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A MyHemophiliaTeam Member said:

I get extremely fatigued even tho I’m mild...also looking for fatigue relief

posted 6 months ago
3 medium

Trying to find the answer

Trying to find the answer

I am protein s deficiency and my levels are almost non existent
I am also protein c deficienc and it is almost unable to be detected.
I have been on blood thinners since September of 2011 I have had a p.e. and 2 small anyruisum. I have been trying to find out what this diagnosis means . I will take blood thinners for the rest of my life. I just can't get anyone to fully explain it to me

9 medium

My Nose Bleed lasted hours, what works best? VWD

My Nose Bleed lasted hours, what works best? VWD

I regularly get them on my left side and have had it cauterized three times. I use a Tampon to help for a clot and stop it but this was a five tampon event in my nose over just two hrs. I also just let it run in the sink for awhile out of frustration! Should I use the DDAVP NOSE spray in this case??

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A MyHemophiliaTeam Member said:

Nasal QR is an over the counter Alternative and cheaper than ddavp

posted 8 months ago
9 medium

How do I discourage my 17 yro. Severe Hemo. A son, not to buy a motorcycle?

How do I discourage my 17 yro. Severe Hemo. A son, not to buy a motorcycle?

.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… read more

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A MyHemophiliaTeam Member said:

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… read more

posted 10 months ago
4 medium

Are there any severe hemophilia A women out there?

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.

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A MyHemophiliaTeam Member said:

I have a niece who has mild hemophilia factor 8 she's in her late twenties and has 3 children, with one son who also has factor 8 deficiency.

posted 10 months ago
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