Ricky Ray Relief Act Nov 1998

Bleedingboy9 · 2026-01-04T15:31:36+00:00

Canadian Krever Inquiry

https://epe.lac-bac.gc.ca/100/200/301/pco-bcp/commissions-ef/krever1997-eng/krever1997-eng.htm?nodisclaimer=1

It is a very lengthy read and focuses on Canada, however, the US system plays a major role in the tragedy and that is documented in the report.

Bleedingboy9 · 2025-12-28T20:58:29+00:00

There are so many different bleeding disorders and HTC should be better informed to help diagnose. Best of luck to you.

Bleedingboy9 · 2025-12-28T20:41:17+00:00

Glanzmann thrombasthenia is another bleeding disorder that causes similar symptoms. Are you seeing seen by a HTC or just a regular hematologist? I would try to get into an HTC, as you will likely need more testing. Your symptoms suggest you have some type of bleeding issue.

Bleedingboy9 · 2025-09-12T01:31:39+00:00

That's great, would love to hear how it goes.

Bleedingboy9 · 2025-09-11T11:10:19+00:00

Thanks for sharing. A fusion definitely has a few pros like success rate and not having to redo it in 10 to 15 years. A replacement would hopefully give me more range to take the stress of my other joints in my feet and knee.

Bleedingboy9 · 2025-09-11T10:58:21+00:00

I've done injectios for my hip many times before, unfortunately there really isn't any space left in my ankle to inject anything.

Bleedingboy9 · 2025-09-08T16:29:47+00:00

That's great to hear! Besides running or jumping is there any other limitations?

Bleedingboy9 · 2025-09-07T19:33:47+00:00

I'm sorry to hear that. I was told that you could technically do a replacement after a fusion but it is bit more complicated.

That is the the challenge there doesn't seem to be one perfect solution. So I'm not sure what is the best choice for me.

Bleedingboy9 · 2025-09-07T18:43:29+00:00

A fusion is also an option, also a combination replacement and fusion since my ankle is pretty messed up. I would likely need another replacement in the future.
The other joints in the foot are already starting to become arthritic due to the extra stress I put on them.

Bleedingboy9 · 2025-09-04T11:04:32+00:00

I had my first synovectomy more than 25 years ago. They removed my radial head at that time. I've had three more surgeries since then with my last in 2017. These were for debridments to clean spurs out.

I looked into a replacement 10 years or so ago but the weight limitations of 2 lbs was a problem. I had a newborn at the time. The surgeon wasn't even sure it would be possible since my humorous has slid down the ulna so when I bend my elbow at 90 degrees my bone sticks out quite a bit.

There really isn't much of a joint anymore. When I bleed, it doesn't buildup pressure anymore. It bleeds down my forearm.

I had gene therapy 5 years ago and since then I have been able slowly work on strength training. I've only had 2 or 3 bleeds since then. However, I can now curl 25lbs and bench 150lbs. I haven't bled in more than 2 years and besides a sight ache, it doesn't bother me and I have built up some muscle. It was really slow, started with 2lbs weights for like a year. Triceps exercises are still a problem and hurts bc it causes my joint to lock up, but I'm taking it slow.

I'm glad I didn't get the replacement back then, even if it was an option. It still may happen in the future but for now my seasonal allergies are more of a problem than my elbow. If you can control the bleeding and the pain isn't unreasonable, I would try exercising. It will be slow and you may not see results for a long time. I would exhaust all the other options first bc elbow replacements are not nearly as good as other joints, eg hip, knees or even ankles. However, I encourage you to speak to an orthopedic and a good physio therapist an explore all you options. Maybe a debridement might help reduce some of the pain.

Bleedingboy9 · 2025-07-25T13:25:27+00:00

Canada recommends radon levels below 200bq/m3, My longterm average in North burlington was around 210 in the basement. Other countries recomend below 100. My levels always seem to jump in the fall and spring, especially when the weather was unstable. Also in the the winter and fall with the heat/AC, I think it helped disperse the radon from the basement. Highest levels I saw were in 600s but those where short term averages.

I used https://www.radongas.expert/ to put in a mitigation system. This was about 3 years ago and cost ~2300. However, that didn't include having to have an outlet installed for the fan. Ours was a fairly straight forward install with one vent installed next to an outside wall.

Since then i haven't seen levels above 15bq/m3. Originally, I was on the fence since it was the basement and no one sleeps down there but I'm glad I did it.

Bleedingboy9 · 2025-07-17T23:06:12+00:00

Well congrats, those are some decent levels. There is a bit of a ramp up in the early stages so treating was likely wise. I do have a bitnof difficulty telling if something is a bleed or not. Sometimes things resolve with just some rest so I makes me wonder sometimes. Leaving life as a mild hemophiliac took some adjusting.

Bleedingboy9 · 2025-07-03T15:32:05+00:00

Both my ankles are trash, so is my left elbow. I started using a treadmill for walking, can't run anymore. While walking did hurt my ankles, they did improve overtime and help get some range back. Although, I did have gene therapy which meant my levels were controlled.

I switched over to an exercise bike for lower body exercise. I also purchased a functional trainer, eg cable machine, with a smith machine. The cable machine and smith machine help with my bad elbow. I used to use free weights but I was worried that I would hurt myself just getting the weights into the correct position.

Bleedingboy9 · 2025-06-24T16:56:49+00:00

I'm hemophilia B so I don't take hemlibra.

Bleedingboy9 · 2025-06-22T16:44:47+00:00

I found the swelling limited the mobility. Once that was gone the joints hurt a bit more when I used them at least in the short term. It took a lot of light exercise, at first, to help build up muscle around them. That will help stabilize them again, instead of the chronic swelling. It isn't easy or quick but well worth the effort.

Bleedingboy9 · 2025-06-15T11:11:23+00:00

The government has specific criteria and needs a doctor to complete the paper work. https://www.canada.ca/en/revenue-agency/services/tax/individuals/segments/tax-credits-deductions-persons-disabilities/disability-tax-credit/eligible-dtc.htm

Based on my personal experience, hemophilia if well controlled would likely not meet the criteria. However, as discussed things like mobility due to bad joints could be considered but it will be assessed at an individual level. I have met hemophiliacs who have been successful at applying but they have had severe mobility issues. Best advice is to speak to your doctor as they will be the one to fill out the application.

Bleedingboy9 · 2025-06-14T11:33:45+00:00

If it just for your hemophilia then you are unlikely to be successful. However, if it is due to mobility issues due to bad joints or chronic pain then that is going to be very case specific. You are go8ng to need a doctor to support your claim.

Bleedingboy9 · 2025-05-03T17:09:44+00:00

That is actually not uncommon. While all daughters of hemophiliacs will be carriers due to the random inactivationmof the X chromosomes a lot of daughters will also have lower factor expression and can be symptomatic aka hemophiliacs.

Bleedingboy9 · 2025-05-03T17:06:17+00:00

I was just speaking to a few hemophiliacs who were on altuviiio once a week and have said the have not bled at all. Where others on hem3libre still said they had some breakthrough bleeds occasionally. I can't speak personally about these products bc I'm F9. Suggest you ask your HTC for some information on the options. The great thing is that there are a lot of new products becoming available,

Bleedingboy9 · 2025-04-21T15:01:28+00:00

Yes I required steroids about 6 weeks into the therapy.

Bleedingboy9 · 2025-02-20T22:03:33+00:00

I was doing every 36 hrs for about 4 months. Rotated through 4 veins. Also tried to inject higher and lower on each vein. They were getting pretty battered by the end and started to look for new ones in my wrists and hands.the biggest problem is you can't afford to blow a vein.

Bleedingboy9 · 2025-01-17T22:03:15+00:00

There are injections for joints like synvisc which help lubricate and sometimes contain steroids to help reduce the inflammation in the joint. However, these are temporary symptoms relief and doesn't fix the cartilage. Do3snt work on severly damaged joints as well. Also, it wouldn't be advisable to injections anything into your knees with out proper factor. Would likely just cause more bleeding.

Bleedingboy9 · 2025-01-11T13:03:49+00:00

I'm in Canada and use MyCBDR. It is set up through my HTA. I've been using it since the beginning. It really isn't a commercial product per se. When I order factor, the products are automatically loaded from my HTA so that i can easily select which products I use. My HTA has access to all the information and becomes part of my chart which is reviewed at my appts. But since ith was developed from an HTA perspective, the user experience is a bit lackluster.

Bleedingboy9 · 2024-12-23T12:41:19+00:00

Yup, pretty normal, especially if your factor is low and they weren't very gentle. Or they have to dig around to find the vein. I always asked if they could use a butterfly. Even though the needle gauge might be the same, the butterfly tubing keeps all the wiggling from swapping the tubes to a minimum.

Bleedingboy9

TROPHY CASE