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Real members of MyHemophiliaTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
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Has Anyone Heard Or Been Told That You Cannot Take Any Omega Oil Supplements If A Vonwillebrands Patient ?

Has Anyone Heard Or Been Told That You Cannot Take Any Omega Oil Supplements If A Vonwillebrands Patient ?

I have been told that taking omega oil supplements could be very dangerous as I have Vonwillebrands. Has anyone else heard or been told this?

posted June 8, 2020
A MyHemophiliaTeam Member

I was told by my daughters’ Hematologist that they couldn’t have anything with fish oil because it could thin their blood. Their bleeding disorder isn’t Vonwillebrands, but I would assume this would… read more

posted November 16, 2021

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

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

posted September 24, 2016
A MyHemophiliaTeam Member

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 the bank etc. the hemo clinic found me a lawyer… read more

posted December 16, 2018

What Could Be Wrong With Me?

What Could Be Wrong With Me?

I noticed some petechiae spots on my abdomen and legs in May. The ones on my abdomen started to spread and get lighter in color in the center. One doctor said that I had ringworm. I started using Lotramin. The spots continued to spread. I went to see a different doctor. He thought that it might be Lupus, but my ANA was negative. My aPTT was 34, which was said to be high. My Factor VIII Activity was 37%. My von Willebrand Factor (vWF) Ag was 81%, and my vWF Activity was 63%. The doctor ordered… read more

posted June 30, 2019
A MyHemophiliaTeam Member

Still no answers. The hematologist is sending me to a rheumatologist now.

posted August 8, 2019

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

posted May 14, 2019
A MyHemophiliaTeam Member

My oldest son was A positive blood type; second son was 0 positive blood type, both had hemophilia VIII-severe

posted January 8

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?

posted December 20, 2018 (edited)
A MyHemophiliaTeam Member

NO ILL EFFECTS!!!

posted October 6

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??

posted April 11, 2018
A MyHemophiliaTeam Member

Is that over the counter ?

posted March 28

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

posted October 1, 2017
A MyHemophiliaTeam Member

Any feedback? My veins are mostly collapsed.

posted June 10, 2018

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

posted June 24, 2017
A MyHemophiliaTeam Member

Call the manufacturer they can help.

posted July 4, 2017
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