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Do Any Of You With Vwd Have Extreme Fatigue,joint Pain And Burning?
I can't seem to get enough sleep anymore. Somedays my joints hurt so bad I can hardly move and I am experiencing a terrible burning sensation around different joints when I move them. The most recent one is next to certain areas along my spine. My VWD is mild but this all worries me since it is happening more frequently.
People with von Willebrand disease (VWD) can experience symptoms such as fatigue, joint pain, and burning sensations. Fatigue can be linked to anemia, which is common in bleeding disorders like VWD… read more
Do You Know Your Limit
Do you ever push yourself through a bleeding episode without infusing I do and it's actually not that bad once the bleeding has calmed down and gone away I hate needles is there any advise for this
I would strongly discourage trying to push through a bleed and not infuse. Especially if it is in any major joint. You will definitely pay for it when you get older and you develop severe arthritis… read more
Do Any Of You With VWD Experience Petechiae And Fatigue?
For the last couple of months, I've experienced periodic extreme fatigue and I get petechiae (small red dotted rash) on my legs and chest. Are these typical symptoms any of you have experienced with your Von Willebrand Disease? What do you do about it?
I am always tired and have petechiae in random places, not to many, they are on my chest and legs. Should I worry?
How Do You Prep For Physical Activities To Avoid Injuries? 🏃♂️⚠️
Staying active is important, but safety comes first. Share your precautions and tips for staying safe while staying active. 🏃♂️💪
Comment below with your tips for injury prevention and help others stay safe while being active! 💬
@A MyHemophiliaTeam Member That’s a great tip! Using knee stabilizing compression sleeves sounds like a smart way to protect your knees, especially with the damage you've experienced over the years… read more
Do Any Of You Lovely People Suffer From Fatigue?
Yes, I’m severe fXI and my fatigue is a daily thing but it’s made worse from the cold. Best thing is to take more time for yourself and caffeine aha
Big Bruise To Forehead
Hi, my 3 year old son has moderate hemophilia, level 3.
He had a nasty bruise on his forehead that has swelled up to a golf ball size, and has rebled a little.
Apart from trans acid, is there anything any of you guys have used to stop the bleeding and support recovery?
We are very worried
Thanks so much
David
For a big bruise on the forehead, especially in someone with hemophilia or a bleeding disorder, it's important to take specific steps:
1. Rest: Avoid using the injured area
2. Ice: Apply a cold… read more
Are You Jealous Of People Who Can Navigate Stairs Without Using The Handrail Or Are You “NORMAL”? 😝
Navigating life with hemophilia can indeed bring unique challenges, and it's completely normal to feel a range of emotions about it. Finding a "new normal" often involves accepting these challenges… read more
Bariatric Surgery And Von Willdebrands Disease
Hello, I was wondering if anyone with hemophilia has had bariatric surgery or any Marjory surgery? I was wondering how the surgery went and if there were any complications? I am considering surgery . Even though I have a very mild form of hemophilia one surgeon said he wouldn't risk it and the other one said it's no big deal?. I was just looking for advice from others who has been through it and the out comes..
Sorry, I know it's been awhile, and you may have had your procedure already. I have had extensive surgeries done, and with preplanning and my HTC doctor's orders in place, I have not had problems… read more
I Live In An Area Of 330,000 People. I Can’t Find A Surgeon To Remove A Cyst. What Do You Recommend?
Hey @A MyHemophiliaTeam Member! Have you found a surgeon yet? Finding a surgeon experienced with hemophilia can indeed be tough. Here are a few suggestions that might help:
- Hemophilia Treatment… read more
When Surgery Is Needed , How Do You Get Oncologists/hematologists To Work With Surgeons To Arrange Surgery, Infusions, And Observation?
I posted an in detail story about what’s happening, but in short. I need multiple surgeries and I am constantly being canceled by the oncologist for numerous reasons (not financial) for some ridiculous reasons such as dates, locations, etc. no referrals or rescheduling, no nothing, just cancels the surgery and surgeons eventually get annoyed and back out leaving me scavenging for other surgeons. Which most once they hear hemophilia refuse to do the surgery because apparently this is a common… read more
I use to have the same situation. Now I have them contact my hemotologist to set up a treatment plan together. Since I started this method. I haven't been rescheduled, denied, postponed, etc
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