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

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180 questions
Does Anyone Else Have Non Itchy Red/purple Dots. Always There.
A MyHemophiliaTeam Member asked a question 💭

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. But that was 15 yrs ago. And i can't remember the… read more

A MyHemophiliaTeam Member

Keep your feet elevated.

posted October 5, 2022
Do Any Of You With Vwd Have Extreme Fatigue,joint Pain And Burning?
A MyHemophiliaTeam Member asked a question 💭

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

Sounds like a joint bleed to me I have a target joint and that’s how it feels when it begins. Or to me it does.

posted May 3, 2023
Is There Anyone That Would Recommend A Supplement Insurance For Copay And Etc.?
A MyHemophiliaTeam Member asked a question 💭

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

A MyHemophiliaTeam Member

I believe there is a hemophiliac organization in all states that can help with payments and other things

posted March 11, 2020
My Nose Bleed Lasted Hours, What Works Best? VWD
A MyHemophiliaTeam Member asked a question 💭

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??

A MyHemophiliaTeam Member

Is that over the counter ?

posted March 28, 2022
Does Any One Have Factor Five Leiden And If So Does Your Body Respond To Pain Medication?
A MyHemophiliaTeam Member asked a question 💭
A MyHemophiliaTeam Member

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 clot. I also had to have the IVC filter… read more

posted February 19, 2019
Whats The Best Healthcare Coverage Plan For Hemophiliacs If You Are Not Employed?
A MyHemophiliaTeam Member asked a question 💭

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 the costs and the difficulty of living out-of-state which might… read more

A MyHemophiliaTeam Member

Check for MarketPlace plans under the Affordable Care Act

posted March 19, 2023
Have Any Women With Mild Hemophilia A (or "symptomatic Carrier") Had Issues With Bruising With Mammogram?
A MyHemophiliaTeam Member asked a question 💭

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

I’ve had a few and never had a problem

posted April 2, 2022
Blood Types?
A MyHemophiliaTeam Member asked a question 💭

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

Interesting question but I don't believe there is any connection between RH factor and hereditary bleeding disorders. Like you, I am O-neg. but that only means we are universal blood donors (like… read more

posted October 23, 2023
I Have Von Willebrand
A MyHemophiliaTeam Member asked a question 💭

Does anyone have chronic pain I have it in neck back hips knees and ankles already have had 1 total knee and 1 total hip replacement

A MyHemophiliaTeam Member

Yes. And they just forced me to find a pain management doctor, even tho I’ve been to two pain programs. The rest, ice, compression, elevation. I used light compression socks around the house like… read more

posted October 5, 2022
Bariatric Surgery And Von Willdebrands Disease
A MyHemophiliaTeam Member asked a question 💭

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

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 doctor's orders in place, I have not had problems… read more

posted July 19, 2018
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