Hemophilia

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9 medium

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

posted about 2 years ago
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 2 months ago
3 medium

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?

posted about 1 year ago
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 6 months ago
0 medium

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

posted about 1 year ago
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 6 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?

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

posted about 1 year ago
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 7 months ago
1 medium

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

posted over 1 year ago
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 5 months ago
3 medium

Does anyone with Type 1 VWD wear a medical alert bracelet?

posted over 1 year ago
A MyHemophiliaTeam Member said:

I make custom ones, if anyone is interested...let me know

posted 5 months ago
4 medium

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

posted 5 months ago
A MyHemophiliaTeam Member said:

My State has a hemophilia program sign up every year.

posted 4 months ago
9 medium

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??

posted 8 months ago
A MyHemophiliaTeam Member said:

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

posted 21 days ago
1 medium

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?

posted over 1 year ago
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 3 months ago
3 medium

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

posted over 1 year ago
A MyHemophiliaTeam Member said:

It's an awful way to have to live but what else can you do?

posted about 1 year ago
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