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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?

A MyHemophiliaTeam Member said:

VWD and get petechia on my arms and chest.

posted over 1 year ago

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

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 also. Hope all is well. Glenn

posted over 2 years 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 which have resulted in my left knee being fused… read more

posted 8 months ago

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

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 all I need to do now is get my diagnosis info… read more

posted almost 3 years ago

For Mild Hemophilia- Females- How Do You Know When To Treat, What Symptoms Do You Experience That You Relate To A Bleed?

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 bleed..... what are your signs? tingling, throbbing, heat, swelling, redness, pain, limited ROM, muscle… read more

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 My Dr doesn't think I need treatment very much… read more

posted about 3 years ago

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

A MyHemophiliaTeam Member said:

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

posted 8 months ago

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

A MyHemophiliaTeam Member said:

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 about 1 year ago

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

A MyHemophiliaTeam Member said:

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

posted about 1 year ago

Does Any One Have Factor Five Leiden And If So Does Your Body Respond To Pain Medication?

Does Any One Have Factor Five Leiden And If So Does Your Body Respond To Pain Medication?

A MyHemophiliaTeam Member said:

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 about 2 years ago
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