Hemophilia

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Being given advate after a procedure and you have von Willebrand's type 2b

Being given advate after a procedure and you have von Willebrand's type 2b

My son, like myself, has von Willebrand's type 2b. He is having his wisdom teeth removed and is going to take Amicar and Vonvendi. Weird thing is advate is also on the list. Anyone else with vW been given this? It is usually given to hemophiliacs

A MyHemophiliaTeam Member said:

I've been given DDAVP

posted 12 months ago

I am pregnant and have a Factor 7 deficiency. Any Factor 7 ladies have advice for a safe pregnancy and delivery?

I am pregnant and have a Factor 7 deficiency. Any Factor 7 ladies have advice for a safe pregnancy and delivery?

A MyHemophiliaTeam Member said:

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… read more

posted over 1 year ago

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..

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 over 1 year ago

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

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 6 months ago

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

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 over 1 year ago

Is ok to use a topical anti inflammatory?

Is ok to use a topical anti inflammatory?

A MyHemophiliaTeam Member said:

I use Diclofenac cream with no problems. I can take small doses of NSAIDS infrequently, but they don't "sit well" with my guts...and they REALLY cause… read more

posted over 1 year ago

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

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 about 1 year ago
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