Hemophilia

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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 7 months ago
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Do any of you with VWD experience petechiae and fatigue?

Do any of you with VWD experience petechiae and fatigue?

For the last couple of months, I've experienced periodic extreme fatigue and I get petechiae (small red dotted rash) on my legs and chest. Are these typical symptoms any of you have experienced with your Von Willebrand Disease? What do you do about it?

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A MyHemophiliaTeam Member said:

I have VWD and have a lot of petechiae and fatigue. My spots range in size but they start out small and over time get larger. They are a purplish red… read more

posted 11 months 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 10 months ago
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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 12 months ago
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I don'know if i fit in. I have factor 5,8 and 10

I don'know if i fit in. I have factor 5,8 and 10

I only take coumadin, i am hearing different treatments from reading others comments. I don't know that i have a lot of questions. I will as i go on, i just want to fit in. I have a hemotologist at the U of M Minnesota. My Dr. Is suppose to specialize in these types of blood disorders. But he has said to me these 3 together are rare. I also have Stills disease which is an autoimmune disease. It is also rare. I was a nurse and a Social Worker very busy and needed. Now… read more

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A MyHemophiliaTeam Member said:

It's okay to be a zebra! I have both a bleeding disorder and a clotting disorder! You would think that they would "cancel each other out" but NO! they… read more

posted 9 months ago
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Elbow pain - older Haemophiliacs

Elbow pain - older Haemophiliacs

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 said:

Yes. I am 62 with severe Hemophilia A and am currently experiencing chronic pain in both elbows, both ankles and both knees. Had total joint replacement… read more

posted 7 months ago
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Does any one have factor five Leiden and if so does your body respond to pain medication?

Does any one have factor five Leiden and if so does your body respond to pain medication?

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A MyHemophiliaTeam Member said:

I have Factor V Lieben and on Percocet for pain. I also have nerve burns done every few months to my left leg where I’ve had 3 clot. I feel every single… read more

posted 2 months ago
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Has anyone have prolonged menstrual cycles associated with excessive bleeding

Has anyone have prolonged menstrual cycles associated with excessive bleeding

Has anyone have prolonged menstrual cycles associated with excessive bleeding and been diagnosed with von willebrand disease

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A MyHemophiliaTeam Member said:

Oh I had terrible periods some times they last 2 weeks sometimes I have two a month and I have Von Willebrand

posted about 2 months ago
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Is there anyone that would recommend a supplement insurance for copay and etc.?

Is there anyone that would recommend a supplement insurance for copay and etc.?

Looking for help with copay and supplement insurance similar to Aflac or etc.? Anyone have any suggestions out there? Thanks

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A MyHemophiliaTeam Member said:

My State has a hemophilia program sign up every year.

posted 9 months ago
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