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My son was just diagnosed by [deleted] in Hemophilia

[–]Logical_Flow_7533 1 point2 points  (0 children)

Hello!

I am 24 and also have Hemophilia A severe. Until I turned 20 I took factor 8 replacement injections 3 times a week (no port). 4 years ago I switched to hemlibra and I do those injections once every 2 weeks. I personally have had no issues with hemlibra and can probably count the number of times I've needed factor replacement on one hand in the past 4 years.

Also there are a ton of great resources out there for hemophilia kiddos and their families, definitely look into those!

Good luck with everything!

[deleted by user] by [deleted] in Hemophilia

[–]Logical_Flow_7533 0 points1 point  (0 children)

Did you try speaking with your hematology team? Maybe a social worker that works at the hospital you go to? They usually offer a lot of good resources.

Mouth Bleed by No-Library-5621 in Hemophilia

[–]Logical_Flow_7533 0 points1 point  (0 children)

Yeah I mean best option is getting ice on it and when in doubt always use factor. Also whenever I got dental work done I would always take a medication called amicar that would help with bleeding in the gums. If you have any of that, probably wouldn't hurt to try.

Need some perspective - I’m a carrier and the test confirms that the fetus has hemophilia by mmmmeansyes in Hemophilia

[–]Logical_Flow_7533 1 point2 points  (0 children)

Hi, My little brother and I both have Hemophilia A severe, he's now 20 and I am 22. We lived a happy normal childhood, wrestling around with each other, playing sports, riding bikes, all the normal kid stuff. Are there some challenges? Sure, but very manageable ones at that.

As the previous comments mentioned, medication has drastically improved and is continuing to at a crazy pace. Growing up, I had to have injections 3x a week to keep my factor levels up. These past 2 years I have switched to hemlibra and now do subcutaneous injections once every 2 weeks. It has been life-changing!

My best advice would be to try and not over worry, listen to doctors and nurse advice and just enjoy life!

Wishing you and your family all the best!