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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.

Featured Q&A

Are You Frustrated With Finding Effective Treatments For Hemophilia?

By A MyHemophiliaTeam Member 1 answer

Do Any Of You Lovely People Suffer From Fatigue?

By A MyHemophiliaTeam Member 1 answer

Do You Follow A Specific Diet To Help With Hemophilia?

By A MyHemophiliaTeam Member 3 answers

What Tips Would You Share To Help With Seasonal Allergies?

By A MyHemophiliaTeam Member 3 answers
201 questions

I Have Factor IX Deficiency. I Am Trying To Get Dental Work Done But They Want To Charge Too Much. Are There Any Programs That Might Help?

A MyHemophiliaTeam Member asked a question 💭
Scott City, MO
A MyHemophiliaTeam Member

Why are they charging so much. Is it just because of the dental work or because your factor 8 deficient?

June 24, 2017

Tips For A Factor IX Who Travels For Work?

A MyHemophiliaTeam Member asked a question 💭
Gulfport, MS

I have factor IX hemophilia. I graduate college on May 12th, 2017 and have a job which will put me on tour with a nationally touring band. What are some tips if you have any that could help? How to get more factor when I'm on the road, contacts I should have, how to get more equipment (needles, syringes, etc) if I need more, etc.
I only take factor on demand, so I don't run out quickly. Don't really see this being an issue, but any information and tips will be helpful.

A MyHemophiliaTeam Member

I am also Factor IX deficient and do alot of traveling, including work related prior to recently retiring.

I always carried 2 doses with me and kept close contact with my base hemophilia doctor… read more

March 11, 2023

Insurance Problems

A MyHemophiliaTeam Member asked a question 💭
Elkin, NC

Well this is a really long story but I am going to make it short. I have Blue Cross Blue Shield of NC they will not cover my Factor for me to have on hand witch is kinda a big deal. Because I am having to miss work to go get my infusion. They are wanting me to pay a stupid amount of money every month to have it at home at witch point I could buy a new Ford F150 every month lol. But does any one have any suggestions how not to get the run around with them or what I should do

A MyHemophiliaTeam Member

Check with your local Hemophilia Chapter for help with insurance issues.

October 8, 2022

Does Anyone With Type 1 VWD Wear A Medical Alert Bracelet?

A MyHemophiliaTeam Member asked a question 💭
Perrysburg, OH
A MyHemophiliaTeam Member

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

July 19, 2018

Does Anyone In Here Suffer From Essential Thrombocythemia/thrombocytosis

A MyHemophiliaTeam Member asked a question 💭
Buffalo, NY
A MyHemophiliaTeam Member

I had TTP in 1992, my platelets were at 9000 and I almost didn't make it ,over 20 plasmapheresis exchanges, my port had to switched out because it malfunctioned ( thank god my husband noticed A change… read more

February 4, 2018

Anyone Have A Very Low Platelet Count With VW Type 2b

A MyHemophiliaTeam Member asked a question 💭
Middletown, NJ

I'm trying to find out if anyone with vW type 2b has constantly low platelet counts that doctors cannot explain.

Being Given Advate After A Procedure And You Have Von Willebrand's Type 2b

A MyHemophiliaTeam Member asked a question 💭
Middletown, NJ

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

I've been given DDAVP

November 20, 2018

Anyone Know If A Child With Hemophilia Has Ever Been Approved For SSI Because Of It?? Any Lawyers That Would Represent At Hearing In State?

A MyHemophiliaTeam Member asked a question 💭
Chehalis, WA
A MyHemophiliaTeam Member

Yes it took me 6 months from the day I applied for SSI & he qualified..having vonwillebrand.he has a life expectancy..

July 29, 2019

NOWIQ And Octapharma

A MyHemophiliaTeam Member asked a question 💭
Sumter, SC

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.

A MyHemophiliaTeam Member

All Factor products available in the United States are safe from Hep C and HIV. Nuwiq is manufactured from human cells, but is not from human blood plasma. Even plasma derived factor in US is heat… read more

October 8, 2022

Has Any One Had A Second Knee Replacement Done? What Was The Life Span Of Your First One?

A MyHemophiliaTeam Member asked a question 💭
Palm Beach Gardens, FL
A MyHemophiliaTeam Member

I posted on this forum that I had both knees replaced. The first one 20 years ago and the second one 5years ago. It was the second one that developed problems. The lower section worked loose. Was… read more

December 20, 2018
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