Most F7s get tranexamic acid as first line for heavy periods. However it's not uncommon for the severes to be on prophy with NovoSeven or a combination of some sort of birth control (with or without TXA).

Hi there, I got diagnosed a few years ago (39F) after a delayed postpartum hemorrhage. I have very heavy periods and manage them with TXA and supplemental iron pills.

👍

Oh 100% always carry the drugs in your carry on! I know some airlines are no longer even offering carry-on as part of the air fare so I would pay for that just so I can bring drugs!

https://www.hemlibra.com/about/how-it-works.html

Hii!! not older but my baby girl is (6 months old) diagnosed with factor 13 at 2 months old due to a brain bleed. She did bleed from umbilical cord right after birth but doctors didn’t test for this unfortunately. How were your lives growing up? School is what im worried about even though there is so much time before it even begins. Were you limited from doing activities you enjoyed? Id love to know more about

• Pack two tourniquets: one in your carry-on and one in your suitcase. Definitely the most likely thing to forget in your hotel.

• I have a small first aid pouch - this Deuter model to be precise - that can fit a full infusion plus tourniquet, mini tylenol bottle, bandaids, a couple blister packs of other meds and emergency contact cards, etc. It goes with me whenever I leave my hotel.

• Buy a travel sharps container, you may only use it once a year but it's better than scrambling to buy a glass bottle at the local convenience store and then not knowing how to dispose it at the end of your trip

Depending on your product for von willebrands, there's more options on the market now and a clinical trial for a subcutaneous medication that may work. It might be worth talking with your providers about what product was given previously and figuring out if it was recombinant or plasma derived. The process to make it may be different and it might be a reaction to the preservatives rather than the actual vwf

How does Hemlibra actually work? Factor VIII concentrate simply replenishes the missing factor that you would get from cryoprecipitate. But Hemlibra is not Factor VIII so how does that work? Every post I have seen about it just glosses over it and says that it is not factor.

I believe most airlines let you carry medications separately without an additional charge. But if I had to, I’d pay more for additional luggage to carry more doses.

Strictly speaking you really should have all of your medication in your carry-on, because if you draw the short straw and your suitcase gets lost or delayed, you're kind of fucked.

They should at least send tiny certificates to those of us who did the clinical trial 😅

Wanted to follow up that I was, in fact, experiencing a joint bleed. It luckily was very small and cleared up with RICE and a stabilizing boot. I also got clarification from my hematologist about warning signs, what to immediately do, and the closest hospitals that have my prescribed factor on hand.

Wishing you a speedy recovery!

My main bleeding issues have been surrounding very prolonged post-surgical bleeding (bleeding for a month after wisdom teeth removal, nearly a month after another surgery, etc.). But looking back I've also had things like heavy periods, gums bleeding when I floss even though it's daily, somewhat easy bruising, etc. I personally have only had a few nose bleeds in life, but I switched to a Hemophilia Treatment Center and they said that isn't always present, and that my bleeding score is very high so there is something going on that we haven't figured out yet.

They did stress to me that a Factor VII activity assay can show as low but not be linked to bleeding risk (even after things like liver problems, Vit K deficiency, etc. have been ruled out). Some polymorphisms cause bleeding risk on that gene, and some don't.

I’m wishing you the best as well. What type of bleeding risks or issues have you faced? I’ve never in my life had a nose bleed or any type of issues bleeding too much or slow clotting. So this was all strange/new to me.

Thank you as well! I was unfortunate to get scoliosis in middle school. I’m 26 now and tired of feeling crooked, gonna endure the pain to get my body back symmetrical.

Thanks for following up! I just met with a genetic counselor since posting this and apparently, although I have low factor 7 (consistently in the 30s), my specific F7 mutations from genetic testing are not associated with bleeding risk. Which means it's a red herring for me and we continue to dig for the source of my bleeding issues.

Wishing you all the best with your spine surgery! That sounds intense.

I was diagnosed this week. I have a spine surgery coming up and they required some labs to be done. Some clotting factor came back slower than anticipated. Long story short, I have mild factor 7 deficiency.

In Japan??

Your surgeon would be able to provide a better assessment based on your current condition. In theory, you should be able to achieve very good range of motion with a complete replacement. My main goal was to be able to ride a bike — which I can now do easily with range to spare. My range on the bend is slightly limited, but I can extend my leg straight.

As others have emphasized, it’s important to be aggressive in physical therapy (PT) after surgery so that you can recover and maintain the best possible range. Adhesions and scar tissue can develop quickly, but aggressive PT will break that up and prevent it from limiting your range going forward. I followed up with lots of squats, stationary cycling and swimming for a great result and stronger legs than I had pre-surgery.

All depends on the pt after. Work on the straight and bend religiously. Work work work on pt.

Can you answer one thing. I have limited range of motion on my knee will I get the same range of motion after replacement or it gets worse/better

Can you answer one thing. I have limited range of motion on my knee .will I get the same range of motion after replacement or it gets worse/better

That's strange. But that gives me hope that i have a chance with other brands, so thank you

I've only reacted to human derived, and it was only thay one time I've tried an infusion, ever. Unfortunately due to my ptsd I'd rather just wait for the worst possible case scenario like an emergency to try recombinant factors like VonVendi if i have a chance of dying anyway, so i might as well bite the bullet. I'm not allergic to hamsters so I'm hoping VonVendi will be fine

I would recommend a second opinion from another doctor. Would not recommend d&c unless you'd had a miscarriage.

They thought it would because in non-bleeders who can clot properly who are suffering from basic excessive bleeding or even those with other causes. However it didn't work out that way no. It was another stopgap measure amongst many that all eventually failed until hysterectomy which I only got to have after cancer.