Do Any Of You With VWD Experience Petechiae And Fatigue? | MyHemophiliaTeam

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Do Any Of You With VWD Experience Petechiae And Fatigue?
A MyHemophiliaTeam Member asked a question 💭

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
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A MyHemophiliaTeam Member

I am always tired and have petechiae in random places, not to many, they are on my chest and legs. Should I worry?

posted 3 days ago
How Do I Discourage My 17 Yro. Severe Hemo. A Son, Not To Buy A Motorcycle?
A MyHemophiliaTeam Member asked a question 💭

.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
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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?
A MyHemophiliaTeam Member asked a question 💭

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
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A MyHemophiliaTeam Member

I use to have the same situation. Now I have them contact my hemotologist to set up a treatment plan together. Since I started this method. I haven't been rescheduled, denied, postponed, etc

posted March 11
Intching, Pins And Needles On Face And Head
A MyHemophiliaTeam Member asked a question 💭

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
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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 Have Von Willebrands. I Have Spontaneous Bleeds Under The Skin. I Also Have Joint Pain. Do VWD Patients Bleed Into Their Joints?
A MyHemophiliaTeam Member asked a question 💭
posted May 12, 2018
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A MyHemophiliaTeam Member

I’m so sorry that seems like it would be miserable

posted May 3
I Don'know If I Fit In. I Have Factor 5,8 And 10
A MyHemophiliaTeam Member asked a question 💭

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
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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
A MyHemophiliaTeam Member asked a question 💭

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

posted November 20, 2018
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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?
A MyHemophiliaTeam Member asked a question 💭
posted April 12, 2017
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A MyHemophiliaTeam Member

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

posted July 19, 2018
Joint Bleeds
A MyHemophiliaTeam Member asked a question 💭

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.

posted September 17, 2020
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A MyHemophiliaTeam Member

I have VWD and have always been told it’s a Factor VIII deficiency.

posted April 29
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

posted September 15, 2020
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A MyHemophiliaTeam Member

Keep your feet elevated.

posted October 5, 2022
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