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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?

posted October 31, 2017
A MyHemophiliaTeam Member

VWD and get petechia on my arms and chest.

posted December 13, 2019

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 the "older" more experienced people,-- who may… read more

posted November 17, 2016
A MyHemophiliaTeam Member

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 also. Hope all is well. Glenn

posted October 3, 2018

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 for other surgeons. Which most once they hear hemophilia refuse to do the surgery because apparently this is a common… read more

posted November 10, 2017
A MyHemophiliaTeam Member

Check with Lone Star Chapter of National Hemophilia Foundation for recommendations on. Hemophilia Treatment Center for help coordinating care.

posted October 8

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.

posted July 21, 2020
A MyHemophiliaTeam Member

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 which have resulted in my left knee being fused… read more

posted September 19, 2020

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 i am homebound and no one in… read more

posted August 11, 2017
A MyHemophiliaTeam Member

I also have three different disorders: 2, 5, and 13.

posted September 16, 2020

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

posted November 20, 2018
A MyHemophiliaTeam Member

I have von williebrands and ITP---(thrombocytopenia) had to have an operation called ablation. Blood. N platelett. Transfusions werent helping me. Had fibroids n polyps. Blood just kept pouring… read more

posted May 9, 2020

Does Anyone With Type 1 VWD Wear A Medical Alert Bracelet?

Does Anyone With Type 1 VWD Wear A Medical Alert Bracelet?

posted April 12, 2017
A MyHemophiliaTeam Member

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

posted July 19, 2018

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

posted September 15, 2020
A MyHemophiliaTeam Member

Keep your feet elevated.

posted October 5

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.

posted December 16, 2019
A MyHemophiliaTeam Member

I’ve had a few and never had a problem

posted April 2

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

posted July 10, 2018
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
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