Hemophilia

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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:

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

posted 3 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 10 months ago

Blood types?

Blood types?

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 said:

My oldest daughter is A-, and my youngest is O+. They both have Delta Granule Storage Pool Disorder. We haven't done any genetics testing yet, but we… read more

posted 5 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 10 months ago

My Nose Bleed lasted hours, what works best? VWD

My Nose Bleed lasted hours, what works best? VWD

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 said:

Nasal QR is an over the counter Alternative and cheaper than ddavp

posted 11 months ago

How do I add someone how has Hemophilia.

How do I add someone how has Hemophilia.

A friend, he's on facebook I would like to mention to him about this site. I don't think he knows about it and I would like to send him a link or a request some how, help please! HELP ME! PLEASE! lol

A MyHemophiliaTeam Member said:

posted over 1 year ago

Is anyone making use of affordable hand held infra red vein viewer devices to assist with seeing your viens.

Is anyone making use of affordable hand held infra red vein viewer devices to assist with seeing your viens.

I have used large costly mobile vein viewer devices in hospital.
I have found other more affordable hand held devices on the web.
Please share any experiences you may have had with your recommendations.
If possible also supply manufactures name and model number of the device.
Thanks

A MyHemophiliaTeam Member said:

Any feedback? My veins are mostly collapsed.

posted over 1 year ago

Where can i get help with getting factor 8 if you do not have insurance or medicaid

Where can i get help with getting factor 8 if you do not have insurance or medicaid

My son 21 has no insurance and disability keeps denying him and so does Medicaid . we can't afford factor 8 for his bleeds . he has to drive an hour or more to another state just to get a factor 8 shot and that's an emergency room visit and Bill every time. Can we get help with getting factor 8 for him to have at home . please help me

A MyHemophiliaTeam Member said:

Call the manufacturer they can help.

posted over 2 years ago

Being given advate after a procedure and you have von Willebrand's type 2b

Being given advate after a procedure and you have von Willebrand's type 2b

My son, like myself, has von Willebrand's type 2b. He is having his wisdom teeth removed and is going to take Amicar and Vonvendi. Weird thing is advate is also on the list. Anyone else with vW been given this? It is usually given to hemophiliacs

A MyHemophiliaTeam Member said:

I've been given DDAVP

posted 11 months ago
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