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Joint Bleeds

Joint Bleeds

I have von Willebrands disease. I really don’t know much about it. I was told its a relatively minor case but that’sall i know. I don’t know what to expect with this disease and have a lot of body pain and headaches. I’m not sure if any of this is from vwd or if it’smy other conditions.

A MyHemophiliaTeam Member said:

I have two kids with the disease as well as myself. It was hard to figure out why we were bruising so bad and why we had a rough time with bleeding but… read more

posted 8 days ago

Does Anyone Else Have Non Itchy Red/purple Dots. Always There.

Does Anyone Else Have Non Itchy Red/purple Dots. Always There.

Hi, I have VWD, I have had red and purple dots for at least 15 yrs. Only on my abdomen and a few on chest. There are tons of them. Some very very tiny, a few look like cherry animolas spell?? A few raised. Most flat and never itch. Never go away completely. Sometimes they seem much worse or more prevalent than other times. Like if i take ibuprofen, which I was told not to but can't help it sometimes. My hematalogist always said its from the VWD.… read more

A MyHemophiliaTeam Member said:

I used to get them on my legs. It was from hanging my legs off the edge of the bed when there was a bleed and I think it was a circulation issue.

read more

posted 8 days ago

Baby Clotting Each Time Blood Is Drawn

Baby Clotting Each Time Blood Is Drawn

My son hasn’t been tested for Factor V Leiden or any other clotting disorder... well he has been...but it was after a blood transfusion.

When he was 2 months the hospital struggled to get his PICC line in.. (kept clotting)

Today he is 10 months and needed to have blood work done.. but they couldn’t get a lot because he kept clotting..

I guess my question is... is this a sign that he would most likely have a clotting disorder?

TIA

A MyHemophiliaTeam Member said:

Better to find a hematologist to ask that question

posted 8 days ago

Intching, Pins And Needles On Face And Head

Intching, Pins And Needles On Face And Head

I’ve been having pins and needles and itching on my face and head from taking norco and methadone to manage my pain. Doesn’t anyone have a way to cope with it or any other information. I’ve tried other pain killers and can’t tolerate them as well as I do the opiates. I also smoke pot at night to deal with neuropathy and anxiety etc.

A MyHemophiliaTeam Member said:

Certainly sounds very similar to my own, however, I have hemophilia factor VIII deficiency, severe...long winded way of saying that I have had problem… read more

posted 6 days ago

Whats The Best Healthcare Coverage Plan For Hemophiliacs If You Are Not Employed?

Whats The Best Healthcare Coverage Plan For Hemophiliacs If You Are Not Employed?

My current situation is that I am 28 years old and am about to start medical school in a state outside my own (I am a Minnesota resident and will be going to Virginia for school). Since I am over 26, I can not enroll under my parents and I also will not be working and the school does not provide insurance. This leaves me with finding private healthcare coverage. Has anyone else dealt with a situation similar to this? I am afraid of… read more

A MyHemophiliaTeam Member said:

Also...if you are from MN, I assume you have contact with the Center for Bleeding and Clotting disorders at the University of Minnesota

posted about 2 months ago

Has Anyone Heard Or Been Told That You Cannot Take Any Omega Oil Supplements If A Vonwillebrands Patient ?

Has Anyone Heard Or Been Told That You Cannot Take Any Omega Oil Supplements If A Vonwillebrands Patient ?

I have been told that taking omega oil supplements could be very dangerous as I have Vonwillebrands. Has anyone else heard or been told this?

A MyHemophiliaTeam Member said:

I had some bleeding problems after taking krill oil supplements for its Omega 3 fatty acids. Had to discontinue them, and hematologist said no more fish… read more

posted 4 months ago

How Do You Deal With People Overreacting To Bruises?

How Do You Deal With People Overreacting To Bruises?

I bruise extremely easy with my May-Hegglin. Many times I have no clue what even caused the bruise. I like to wear skirts, dresses and shorts, but lately I dread wearing them because of my bruises and the reaction I get from others. I know I shouldn't care, but I don't want people to think I am abused either.

A MyHemophiliaTeam Member said:

My youngest daughter has problems with bruising due to her Delta Granule SPD. For years I was accused of abusing her because of the bruising.… read more

posted 6 months ago

Do Any Of You With Vwd Have Extreme Fatigue,joint Pain And Burning?

Do Any Of You With Vwd Have Extreme Fatigue,joint Pain And Burning?

I can't seem to get enough sleep anymore. Somedays my joints hurt so bad I can hardly move and I am experiencing a terrible burning sensation around different joints when I move them. The most recent one is next to certain areas along my spine. My VWD is mild but this all worries me since it is happening more frequently.

A MyHemophiliaTeam Member said:

Me as well! I don’t know what is to expect from this VWD though. I have many other conditions like fibromyalgia and psoriatic arthritis

posted 8 days ago

Have Any Women With Mild Hemophilia A (or "symptomatic Carrier") Had Issues With Bruising With Mammogram?

Have Any Women With Mild Hemophilia A (or "symptomatic Carrier") Had Issues With Bruising With Mammogram?

I am scheduled for diagnostic mammogram. I have factor VIII levels in the low 40% and tend to bruise easily. Worried about the mammogram causing significant bruising so am wondering about the experiences of others.

A MyHemophiliaTeam Member said:

Yes everytime!

posted 4 months ago
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