What’s The Best Analogy You Used For A Family Member To Understand Hemophilia? | MyHemophiliaTeam

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What’s The Best Analogy You Used For A Family Member To Understand Hemophilia?
A MyHemophiliaTeam Member asked a question 💭
posted November 29, 2017
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A MyHemophiliaTeam Member

Simply? Well... love of iron... basically your red blood cells have an overly ambitious propensity to bind to iron. it can cause iron overload disorders (generally from recurrent transfusions) which then affect the rest of your organs including your brain and organs and can result in death. The most common is Wilson’s disease. People that have it often require chelation therapy with another element to bind to the iron so that it is able to be properly excreted by the body. ;)

posted November 29, 2017
A MyHemophiliaTeam Member

How I really educated myself and my daughter was we signed up with our local chapter I live in Florida so mine is Florida Hemophilia Association just look up the last cal chapter where you are they have a lot of events and information they can help you a lot every year there is a symposium for a whole weekend and you will learn so much but they also have people that can help you in your education

posted November 29, 2017
A MyHemophiliaTeam Member

In my case I went undiagnosed for a long time. I would loose a lot of blood and they would just keep giving me transfusions. They said I was like a gas tank with a hole in it.

posted November 29, 2017
A MyHemophiliaTeam Member

For my son, it's an enlarged platelet disorder, I explain that it's like trying to stop a leak with dinner plates. Eventually you'll get enough and it will stop. But, it's going to take time and larger leaks will require medical attention.
In your case, it could be plates with cracks or small holes? You need something to support the plate structure (FACTOR) so the plates can stop the flow.

posted November 29, 2017
A MyHemophiliaTeam Member

Two ways that I have learned how to explain hemophilia a is this: the domino effect, when one domino is missing in the track it stops the track.
The other is a whole in a fishing bet. The "factor" is a new line to be able to keep the platelets aka fish in the net.
And of course the scab thing. That the protein which is missing, a scab keeps leaking/oozing .

posted December 11, 2017

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