Hemophilia

Questions + Answers

Don't see your question? ask question
View:

I'm wondering does hemophilia cause us to have more intense pain than normal people???? My pain has become almost unbearable at times.

I'm wondering does hemophilia cause us to have more intense pain than normal people???? My pain has become almost unbearable at times.

A MyHemophiliaTeam Member said:

Isn’t pain relative to the person that feels it. Since I’ve grown up bleeding I don’t try to compare to a “normal” who hasn’t had regular bleeds. I only… read more

posted over 1 year ago

Spontaneous black and blues

Spontaneous black and blues

I have what appears to be blood vessels that break spontaneously in my fingers and feet. It burns for a while and then a black and blue mark appears. is this common in people with Von Willobrands Disorder?

A MyHemophiliaTeam Member said:

I have on Wilton brands disease, but genetic testing showed high likely hood of Ehlers Danlos syndrome, anybody have severe problems with turning purple… read more

posted 11 months 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… 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… read more

posted about 1 year ago

NOWIQ and octapharma

NOWIQ and octapharma

got a packet from the non-profit chapter about this company and their product. was just wanting to see the reviews from people that i have connected to or a support group that i am in.

its derived from human based cells, from what i am gathering. just not sure on it as last i remember when they had tried something along that line the AIDS and Hep C outbreak occurred.

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… 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… read more

posted over 1 year ago

I am wondering about fatigue with mild VWs.

I am wondering about fatigue with mild VWs.

My VW is mild, so I have not always given it the credit it deserves in causing complications in my life. But I was diagnosed with idiopathic hypersomnia (non REM narcolepsy) several years ago. I found out a year and a half ago I was misdiagnosed and had iatrogenic hypersomnia caused by an antidepressant. I thought I was completely cured when I stopped taking that medication, and my improvement really is a miracle. But I have always been a little more fatigued than the… read more

A MyHemophiliaTeam Member said:

I get extremely fatigued even tho I’m mild...also looking for fatigue relief

posted 10 months ago

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:

I also have VWD and get the same spots on my chest , face and even fingers .

posted 4 months ago

Lawyer for SSI or ssd ?

Lawyer for SSI or ssd ?

Received SSI until age of 26 then income interfere with it since 2006 been replying use all my work credits and been turn down for SSI they stated my condition has improved how do I go about getting lawyer or help getting this back low income no health insurance has really caused my condition to worsen

A MyHemophiliaTeam Member said:

SSI is for poor people, SSDI is for people too disabled to work. They both have income and asset requirements. Like you can have two cars or $10,000 in… read more

posted 11 months ago

Does anyone else have side effects from Amicar?

Does anyone else have side effects from Amicar?

I have been on Amicar most of my life and dealt with the side effects, but they seem to be affecting me more lately. I've had nausea and vomiting, and i get really dizzy and ligt headed to the point of fainting. The worst though is along with that, I get super overheated. Does anyone else have these side effects? It's gotten so bad I have even considered trying to switch to Lysteda in hopes it won't have the same effects. Anyone have experiences with switching?

A MyHemophiliaTeam Member said:

I've had similar side effects (nausea, dizziness) with Amicar, which I've used after invasive dental procedures (extractions, other oral surgery). It… read more

posted 11 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… 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… read more

posted over 1 year ago
Continue with Facebook
Sign up with your email
Already a Member? Log in