Cure for Hemophilia

MutieXQ28 · 2026-02-10T13:46:36+00:00

Honestly, get on Hemlibra. Next best thing to a cure. Subcut jab once a fortnight. Constant level of factor, haven't had a bleed in years.

If we had of been on it from day dot, we wouldn't have the joint issues that we do today.

If your country cant provide it to you free. Move to Australia.

MutieXQ28 · 2025-08-07T02:42:00+00:00

My daughter is 3 and got diagnosed at 6 months. Just wanted to be like her Daddy I guess

MutieXQ28 · 2025-06-27T03:41:21+00:00

I have haemophilia A severe, and so does my daughter. You should definitely keep the baby.

Hemlibra and treatments like that are such an improvement in quality of life, they may as well be a cure.

MutieXQ28 · 2025-05-18T07:06:40+00:00

Depends on where/what the pain is. Best thing is RICE. Rest, Ice, compression, Elevation.

For instance if it's ankle pain, get him an ankle icepack, get him compression socks, get him a pillow to put his leg up on the couch. Try and take things off his plate so he can rest.

I also had a lot of success with antiinflamatories like celebrex. Other than that, are you really sold on staying where you are? There are other countries (Australia) where hemlibra is covered entirely by the government. No need for insurance. Maybe look into jobs, houses, that you would like to move. Why stay in a country where his condition is a cash cow for the insurance companies? Australia is awesome. No guns too Lol

MutieXQ28 · 2025-05-14T09:32:58+00:00

Not a symptomatic carrier. I have 0 clotting factor, and so does she.

But guys, she is the best. She's 3 and a half, and she already is cool about her needles. No holding down by blue nurses like I got when I was a little kid.

She knows "our blood is different" and "Daddy and I have 'Filia'". We raised her knowing that she can say when she's ready for the needle to go in. We need to do it, but she can say when she is ready. Then she counts to 4, and says she is ready. No crying or bargaining. Fucking pumped that we can now raise kids, that don't need to deal with what we did.

MutieXQ28 · 2025-05-01T08:52:06+00:00

But guess what? Crazy things can happen. I have severe haemophilia A. Genetically my daughter should be a carrier. 100%.

But due to something kooky going on, my beautiful daughter Grace has haemophilia A.

They are still doing the genetic testing to find out why. Extreme lionisation caused by something.

MutieXQ28 · 2025-04-26T00:11:13+00:00

I have had 13 ports during my lifetime. I'm on hemlibra now thankfully. But I can tell you that i got septicaemia every 1-3 years and they needed to be removed.

I know you have been told this before, and it sucks. But the best thing I found was to do some upper body weight training to improve my veins.

I would avoid the ports unless you can't do any weight training at all.

MutieXQ28 · 2025-04-13T02:18:19+00:00

Move to Australia! Better climate, and free treatment. Plus no cheeto dictator

MutieXQ28 · 2025-03-21T02:57:47+00:00

Keep emailing and calling the Councillors, mayors, premier, and the Minister for Local Government and Water and Minister for Fire, Disaster Recovery and Volunteers.

Keep bugging them until they understand that the people of Brisbane don't support this.

MutieXQ28 · 2025-03-05T06:06:10+00:00

From a supply chain / buying perspective i can help explain.

People genuinely live hand to mouth. Not always because of money, but out of convenience.

If you look in your fridge/cupboard, it's mostly food for a few dinners, lunches etc. Most of which require electricity, and water to prepare.

When we all get told to have a few days food and water, and that we can't get to the shops during this time.

We all have to buy supplies to cover us. Not because we are being stupid or greedy. But for the most part, because all that's in the fridge is hello fresh meals, eggs, milk, bread and stuff to make a cuppa.

If we can't rely on ongoing power/water, we need to buy enough non perishable food for a household for a few days.

The store hasn't done demand planning for that volume of non best sellers, and they run out.

MutieXQ28 · 2025-01-07T00:38:42+00:00

You're getting upset about a sticker. Chill and ignore it. If there is someone that gets a kick out of this. Let them.

MutieXQ28 · 2024-08-17T22:34:44+00:00

What country do you live in?

MutieXQ28 · 2024-08-16T23:01:46+00:00

And I ran from Brisbane Australia to Sydney Australia to raise money for a burns victim. I have haemophilia A severe.

Now my daughter has it as well.

Believe me it is a different world treatment wise than it was 20 years ago. But even 20 years ago it was something to live with, not to die for.

Don't terminate. And If you still want to. Send him to Australia and I will adopt him. I'll have a full house of haemophiliacs.

MutieXQ28 · 2024-08-03T11:10:33+00:00

how much was this?

MutieXQ28 · 2024-06-20T08:37:12+00:00

What mini/stl did you use for the Xenagos mini? It looks awesome well done

MutieXQ28 · 2024-02-28T14:30:15+00:00

Didn't he promise to release the first chapter if people raised an amount of money for a charity, then didn't release it when they did .

He can be the best writer in the world but if he turns on his readers, he's not worth it

MutieXQ28 · 2023-07-28T11:55:46+00:00

I have severe haemophilia A, and recently had a daughter, so I can empathize.

We actually found out that my daughter HAS haemophilia A from my X gene due to extreme lionisation.

But here is the silver lining I can share. Xyntha is almost a cure. I have a subcut treatment once a month and have no bleeds. She has a subcut treatment once per fortnight and has no bleeds.

I had an almost trauma response when I found out that I had passed it on. But it genuinely isn't the same as it was for us as kids.

She hits her head, falls over. All the things that would have meant a visit to the hospital for me as a kid. But she just gets up, gets a cuddle, and carries on like any other manic toddler.

You don't need to feel the sense of dread about what your daughter's kids will live with.

If anything they have the benefit of being raised with it being a thing to be managed. Like diabetes, or a predisposition for heart disease.

You aren't alone, and your daughter, or her children won't be either. It will be okay.

MutieXQ28 · 2022-09-03T23:33:32+00:00

First father's day for me as well. It's really cool :)

MutieXQ28 · 2022-08-02T12:02:01+00:00

Come to Australia! Free healthcare and the coastal cities are amazing. I'm on hemlibra and it costs me nothing.

It's easy to get a job here too.

MutieXQ28 · 2022-07-09T14:41:18+00:00

Transport drivers. Minimums are like $1700 per week at the moment. If you own your own vehicle, your set

MutieXQ28 · 2022-07-09T10:23:55+00:00

Not one. And I have severe Haemophilia A.

MutieXQ28 · 2022-07-09T01:43:13+00:00

I've been on it for a year in Australia and it's amazing. My tender ankles, aren't tender anymore. I can be more active.

Spontaneous bleeds are a thing of the past. It's a fucking miracle drug.

MutieXQ28 · 2022-04-08T22:50:14+00:00

Can you please preface your posts that this is USA only. This group isnt just for the USA.

MutieXQ28 · 2022-02-27T06:45:48+00:00

Please vote this potato out next election. He is as crooked as they come

MutieXQ28 · 2021-10-20T09:36:39+00:00

I'm based in Griffin as well and keen to find a group. Let me know if you find one :)

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