r/Hemophilia

Hi all, I've got mild Haemophilia and have a long flight coming up (16hrs with a 2h30 layover.) I don't self infuse and only take factor in hospital when it is needed after an accident or surgery. I have tranexamic acid available on demand but again that is only taken when needed. I will have my meds on my carry on luggage but my question is this

Is there any precautions I need to take for this flight? Also is it safe/recommended to wear compression socks? Thanks im advance.

I'm getting arthritis in my hands. My parent who has it has deformed hands and I don't want that. It's getting worse.

I'm seeing a rheumatologist who keeps prescribing/recommending medications and supplements that aren't safe for vWD and says there is nothing else available. They say the only thing that can slow this down is anti-inflammatories.

I have <10% the normal vWD factor levels and vWD2a. I can't afford to be taking anything that's going to make it worse.

Is there any medication or supplement that you use that reduces inflammation? I am not seeking recommendations for pain, just inflammation. It appears everything that reduces inflammation also interferes with clotting.

I take a steroid for inflammation 3 days per month already as prescribed.

I will, of course, research and seek medical advice for anything before I take it. I am just wondering what you all use so I have something to research.

TIA🌺

My recent post about the National Haemophilia Database in the UK on Instagram explains how in the UK being born with Haemophilia means you automatically surrender your most confidential health data to a private company for your whole life and afterwards.

You must actively log all of your information or risk losing your life saving medications.

I've personally removed my data for research purposes but for non-research purposes it's impossible to opt-out.

I thought it was important to share here, the final slide is a guide to remove your data (for research purposes)

Did you know about this? And if you aren't from the UK is this standard practice in your country?

F17 (Von Williebrand disease) For as long as i had my period since i was 11 i’ve had extremely heavy and painful periods. I’ve been on and off with the BC pill for a couple years. My periods were light and i had no cramps. I don’t like the side effects that came with the pill and i noticed weight gain with some brands i tried so i stopped taking them completely a couple months ago so ive just been dealing with my painful,heavy, periods. I got diagnosed with Von Williebrand Blood disease about 2 years ago. So i thought it made sense why my periods are so heavy. Any other woman with Von williebrand blood disease experiencing or experienced this or could it be something else?

Hi everyone,
I’m from Nepal and have severe hemophilia. I’m currently in the 7th semester of my Bachelor’s degree in Electrical Engineering, and I plan to apply for a master’s program.
My biggest concern is access to hemophilia treatment while studying abroad. I’m currently considering the UK and Canada.
I’d really appreciate hearing from anyone who has experience with this, especially international students with hemophilia.
I have a few questions:

Is clotting factor treatment covered by the NHS or health insurance for international students in the UK?

Is clotting factor treatment covered by provincial healthcare or health insurance for international students in Canada?

If not, are there any private insurance plans that cover hemophilia treatment?

Has anyone with severe hemophilia successfully studied in the UK or Canada? If so, how did you manage your treatment?

Thank you very much for any advice or guidance!

My 2.5yo is Severe A and on monthly Hemlibra. He bumped his head hard on an exercise bike 8 days ago-we spent the night in the hospital and got 3 infusions of factor over 36 hours. CT scans were clear and we were discharged. He's had a huge goose egg in the middle of his forehead since, and two days ago he got "racoon eyes"-bruising under his eyes, which the Dr said to expect. This entire time he's been his usual happy, active self, with no worrying behavior or symptoms other than a big egg on his forehead and the bruising. But the egg is not going down (and might be a bit bigger, it's hard to tell. It seems like the diameter is getting smaller but it's sticking out more.)
Has anyone experienced this with a severe toddler? Does it just take longer to heal for him than it would a child without hemophilia? How long did it take for tue bump to go away?

I recently had an iliac vein compression stent put in and developed 4 blood clots across the leg. Doctor wants me on eloquis and says they’ll go away. However, im suffering more than I was with just the compression before the stent. What warrants a doctor performing Thrombectomy vs waiting it out on blood thinners?

Hello All — I’ll be transitioning to Medicare later this year and I’d like to tap this audience for any learnings and advice.

My understanding is that traditional Medicare Part B covers hemophilia treatment and clotting factors. With that in mind, I think I will be opting for traditional Medicare A and B — with part D drug plan and a Medigap policy (not an Advantage Plan).

Would anyone like to share experience or advice? Thanks!

I have Classic Severe Hemophilia A (no inhibitor).

I have hemophilia b and decided to get my ear lobes pierced. What should I expect from the healing process? I'm not bleeding at all, but in the hours after the piercing I've been realizing more and more that I have no clue what to expect.

Hi everyone,

I have severe Hemophilia A and I'm considering moving to Romania in the future. I'd really like to hear from people who actually live there with hemophilia, or who have family members with the condition.

What is daily life like with severe Hemophilia in Romania? How easy is it to get access to factor VIII prophylaxis and emergency treatment when bleeds happen? Are modern treatments available, and do patients usually receive enough medication? Do you feel that your treatment is reliable and consistent?

I'm also interested in the practical side of living with hemophilia in Romania: dealing with health insurance, getting prescriptions, traveling within the country, finding knowledgeable doctors, and overall quality of life. If you moved to Romania from another country, I'd especially appreciate hearing about your experience.

Thank you for sharing any information or personal experiences.

So last week, my son was finally awarded DLA! However, he was given middle rate which I found very surprising. My older son receives middle rate and that's because he has speech delay. I would never think they're on the same level of care, regarding their conditions. Is it worth appealing? Unsure as it's taken me years to get this, so wondering if I should just take it as a win and be relieved it's over, or keep fighting for what my son may be entitled to.

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For any UK parents here, can I ask what rate you receive and how old your child is please? Just any info/advice you can give please, I'd appreciate it! Thank you!