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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

Which Hemophilia Symptom Surprised You The Most?

By A MyHemophiliaTeam Member 2 answers

Anyone In Here From Close To Madison, Indiana.

By A MyHemophiliaTeam Member 1 answer

Are You Frustrated With Finding Effective Treatments For Hemophilia?

By A MyHemophiliaTeam Member 1 answer

Hi Team, This MyHemophiliaTeam What Kind Of Purpose Is Stated, For Helping The Member With Hemophilia ?

By A MyHemophiliaTeam Member
201 questions

What Is Protein C Defecasy And Protein S Defecasy

A MyHemophiliaTeam Member asked a question 💭
Logan, OH

How Bad Is It To Have Von Willebrands And A Platlete Disorder While Delivering A Baby?

A MyHemophiliaTeam Member asked a question 💭
Kenosha, WI

I have Vonwillebrands so does my daughter who is pregnant but she also has a platelet disorder on top of the Von Willebrand's when I was pregnant my doctor said the Von Willebrand's gets better when you're pregnant but when my sister had both her babies she also has a platelet disorder on top of the von Willebrand's she almost died from bleeding I was told von Willebrand's and platelet disorder during pregnancy makes it worse my daughter's Dr doesn't seem to be worried about it but I am and I'm… read more

A MyHemophiliaTeam Member

I have vwd with platelet and factor VIII ISSUES. I have two children and only had problems after the birth of second. I bled for a month afterwards until they gave me fVIII infusions. That seemed to… read more

December 18, 2023

My Nose Bleed Lasted Hours, What Works Best? VWD

A MyHemophiliaTeam Member asked a question 💭
Medford, OR

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

Is that over the counter ?

March 28, 2022

I’m Moving To Philadelphia, Pa And Am Looking For Recommendations For A Hemophilia Clinic To Register With. Can Anyone Make Recommendation?

A MyHemophiliaTeam Member asked a question 💭
Allentown, PA
A MyHemophiliaTeam Member

Hi, David. I have been at Cardeza Foundation at Thomas Jefferson for decades. Chris Ramsey

October 8, 2022

Has Anyone With Von Willebrands Been On A Medication That Lowers Platelet Count?

A MyHemophiliaTeam Member asked a question 💭
Moorhead, MN

I am looking at starting a Rx called Nuedexta. It's the one and only med approved for the condition I'd be treating, but it can lower platelet count. My VW's is mild... this condition I'm looking to treat is not... how do I go about knowing if it is safe for me? I've had some incompetent Drs in the past and will not trust any Dr blindly if I can research too.

A MyHemophiliaTeam Member

Very helpful! Thanks!

May 9, 2018

Pregnancy, Labor And Delivery With Von Willebrands

A MyHemophiliaTeam Member asked a question 💭
San Antonio, TX

HI I am a 31 year old female with Von Willebrands. I was told I would die during labor and delievery, but notice you have 2 children. Did you have any complications during pregnqacy and childbirth?

A MyHemophiliaTeam Member

Also as long as you know that you have Von Willebrands and are able to get proper treatment before and after delivery there is no reason why you shouldn't have a perfect pregnancy. Actually your body… read more

December 18, 2017

When Surgery Is Needed , How Do You Get Oncologists/hematologists To Work With Surgeons To Arrange Surgery, Infusions, And Observation?

A MyHemophiliaTeam Member asked a question 💭
Little Elm, TX

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

I use to have the same situation. Now I have them contact my hemotologist to set up a treatment plan together. Since I started this method. I haven't been rescheduled, denied, postponed, etc

March 11, 2023

Do Any Of You With VWD Experience Petechiae And Fatigue?

A MyHemophiliaTeam Member asked a question 💭
Perrysburg, OH

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

I am always tired and have petechiae in random places, not to many, they are on my chest and legs. Should I worry?

September 22, 2023

Mussel Spasms

A MyHemophiliaTeam Member asked a question 💭
Pretoria; Gauteng South Africa

Last night my son got a few mussel spasms .... is this a concern? Is this a symptom of a brain bleed that might have been missed? My son is sever Hemophilia Type A

A MyHemophiliaTeam Member

Get him to see doctor at Hemophilia Treatment Center.

October 8, 2022

Is Anyone Making Use Of Affordable Hand Held Infra Red Vein Viewer Devices To Assist With Seeing Your Viens.

A MyHemophiliaTeam Member asked a question 💭
Durban, ZA

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

Any feedback? My veins are mostly collapsed.

June 10, 2018
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