My friend is considering switching from OD to Prohpy.
Are there materials that are helpful? Benefits of switching? Recommended prophy treatments? Pros/cons?
Hello fellow bleeders ๐. My daughter and I both have VWD 2A and so I am on a newsletter for her pediatric hematologist and the just shared information about a college scholarship open to students with a diagnosis of Hemophilia B. Just wanted to pass along the information for anyone who may be eligible and interested to apply:
The B More Scholarship is open to anyone with a diagnosis of Hemophilia B and is pursuing a degree or certification after graduation from High School, even if youโve been out of school for a while.ย Awards of up to $2000 are made to help qualified applicants with financing their education.
If you are interested, consider applying for the B More Scholarship, or forward this message along to someone you know with Hemophilia B who is planning to attend school this fall.ย Now is the time to start the application process to be eligible for consideration for this yearโs awards.ย Application deadline is April 28, 2022.
You can learn more at www.BMoreScholarship.com or login to start an application using the program key Medexus at the following link: https://aim.applyists.net
Has anyone switched from OD to Prophy? What made you switch? Which treatment has worked best for you?
Anyone considering gene therapy?
Savvy Cooperative is looking for men who have been diagnosed with hemophilia A or B
Screener
Details:
90-minute interview
From home
Eligibility criteria:
Adult men diagnosed with hemophilia type A or type B
NOTE: Only patients with verified diagnoses will be considered
US resident
Receive:
$165
https://gigs.savvy.coop/hemo-men/?r=602651
Hey everyone, my name is Ash, and i'm a 20 year old male dealing with Hemophilia type B. The reason behind this post is simple, I don't usually know how to talk about this because my friends don't really get it. They are supportive as best they can, but they can't advise me or anything down that line. In other words I feel outcasted because of this. Hence this post, I hope to speak to anyone here, and somewhere down the line make a new friend. Thank you for reading.
A family member suffers from inhibitors and still bleeds w/Hemlibra. He's been using Novo7 for years and often takes days or weeks to stop a joint bleed (infusing every 2 hours), sometimes being hospitalized. HTC suggested he look into the new FVIIa product, Sevenfact which we'd never heard about. Apparently it was recently approved in the US but isn't widely known yet. I feel that new products offer options which is always a positive thing for bleeding disorder patients.
We came across a compelling video posted by a patient.
https://www.youtube.com/watch?v=dLtICprebn4
Dosing is different than Novo and 84% of bleeds in the trial were stopped with just one dose. It's a larger loading dose but then you wait 9 hours before dosing again (if needed). Compared to Novo dosing every 2 hours, this sounds like a game changer. NHF/MASAC guidelines recommend Sevenfact use in conjunction with Hemlibra.
Has anybody had any personal experience with Sevenfact?
Hello everyone, First, I wish you all a safe weekend! Second, I wanted to know if anyone has ever gotten a piercing. Recently I've been interested in getting one in my eyebrow and/or ears. I know they are contraindicated but up to what extend? What if I get prophylaxis before getting them? I will definetly consult with my doctor before even attempting them, but I'd like to know if anyone has any experience with this.
Thanks in advance!
Hello , is there someone who got moderna vaccine whit hemophilia b?
Can you share your experiences? Thanks and sorry for my bad english
Was talking to a friend who lives in other country which is also hemophilic and talked about Hemlibra and he said there's not for Hemophilia B, is that true ? If so, why ? K understand the difference between is the factor we have deficiency in produce XIII and IX, but there should be no problem there, right? The principle is the same.
After almost bleeding to death after surgery in June 2020, I was diagnosed with mild hemophilia B (12%). I've had what I now recognize as bleeds growing up after surgeries/injuries but no one ever picked up on it as being anything except an expected surgical risk. I have a few questions for other people who are mild or symptomatic carriers in a similar range.
-I have chronic joint pain, but I don't know if that is due to bleeds or something else. How do you know if joint pain is due to a bleed?
-My hematologist hasn't said anything about any treatments except for when I have to have some upcoming surgical and dental procedures. Do any of you with similar Factor IX levels infuse or take something like Stimate? I don't really spontaneously bleed to my knowledge aside from nosebleeds or if I hurt myself, and even then though bleeding can go on for a bit, it has not really to a concerning amount. I have to give myself weekly subQ injections for an unrelated issue and have bruising related to this, but again hasn't been terribly concerning since it's always been that way for me.
-Should I register with a Hemophilia Treatment Center? Is there a benefit of that vs just working with a hematologist?
-EDIT: Would anyone be willing to post an image of what a joint looks like during a minor joint bleed compared to what their joint normally looks like? Google shows me what I imagine are severe joint bleeds, but a visual would help me. Totally okay if you're not comfortable!
Thanks!
I'm a 29M and otherwise healthy (no medications, normal weight, physically active). So my spouse and I (29M) are planning on having kids and as part of that we had some genetic counseling done. Unfortunately the results came back indicating I had a f9 gene mutation (hemophilia B). Since this is x-linked and I'm a male, the report from the genetic counselor indicated that I'm not only a carrier for hemophilia B but I actually HAVE hemophilia B.
I was shocked by the news (found out 2 days ago) and trying to figure out what I should do. Other than frequent nosebleeds as a kid I don't think I have had any "symptoms" of hemophilia.
So a few questions for the docs here
-
Should I schedule a doctors appointment to have further tests done? (I have a health plan in Massachusetts but haven't selected a PCP yet so that may be difficult)
-
Is it possible that my factor IX levels are normal even though I have the f9 gene mutation?
Thanks!
Well, I've passed all the hurdles and by Mid January 2020 hope to be injected with the Factor IX gene treatment SPK-9001 in a Phase 3 study.
Some Phase 2 results
https://hemophilianewstoday.com/spk-9001/
This will be a worldwide study but quite small, anyone who is also entering this trial, I'd love to trade notes.
Hoping for a miracle in 2020!
- Brian
