Immune tolerance therapy (ITT) and hemophilia | MyHemophiliaTeam

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Top 10 Search Results for "Immune tolerance therapy (ITT)"

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Are There Ways To Lessen Fatigue That Comes With Von Willebrand Disease?
A MyHemophiliaTeam Member asked a question 💭

I have von willebrand disease. A lot of days I feel very tired and like a bus hit me. I also have pain in my joints and bones when I feel fatigued. The only way I can explain it is feeling like I have the flu. Are there any ways or tips to lessen my fatigue so I don’t feel so ill?

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A MyHemophiliaTeam Member

I feel the same way. I find that making sure I drink enough water and keep moving as much as possible even though I don’t want to

Does Anyone Else Have Side Effects From Amicar?
A MyHemophiliaTeam Member asked a question 💭

I have been on Amicar most of my life and dealt with the side effects, but they seem to be affecting me more lately. I've had nausea and vomiting, and i get really dizzy and ligt headed to the point of fainting. The worst though is along with that, I get super overheated. Does anyone else have these side effects? It's gotten so bad I have even considered trying to switch to Lysteda in hopes it won't have the same effects. Anyone have experiences with switching?

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A MyHemophiliaTeam Member

NO ILL EFFECTS!!!

Does Anyone Else Have Non Itchy Red/purple Dots. Always There.
A MyHemophiliaTeam Member asked a question 💭

Hi, I have VWD, I have had red and purple dots for at least 15 yrs. Only on my abdomen and a few on chest. There are tons of them. Some very very tiny, a few look like cherry animolas spell?? A few raised. Most flat and never itch. Never go away completely. Sometimes they seem much worse or more prevalent than other times. Like if i take ibuprofen, which I was told not to but can't help it sometimes. My hematalogist always said its from the VWD. But that was 15 yrs ago. And i can't remember the… read more

A MyHemophiliaTeam Member

Keep your feet elevated.

If Possible, Have Your Child Attend A Hemophilia Summer Camp To Meet Others With Our Condition, Learn Basic Facts And Build Community..
A MyHemophiliaTeam Member asked a question 💭

Nowadays in countries with advanced medical care, many hemophiliacs never learn enough about our condition--about self-care and prevention of injury. It is critical that youngsters learn to avoid joint problems that can linger a life-time and cause chronic pain, plus the reasons for and importance of treatment. Not every young man needs to play tackle football or climb mountains. Encourage reading and development of positive social skills, things we all need in life.

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Are There Any Severe Hemophilia A Women Out There?
A MyHemophiliaTeam Member asked a question 💭

My six-year-old daughter has severe hemophilia A, which we all know is extremely rare. So I’m looking to connect with women who are in the same position. As my daughter gets older, she’s starting to ask more questions about her condition and I would love to be a bit more prepared to answer her questions, and share experience from those with first hand experience managing hemophilia as a woman.

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A MyHemophiliaTeam Member

My aunt was diagnosed in the 1950’s with moderate Factor VIII deficiency. She is 70 years old now. With the treatments that are currently available your daughter should do very well. You should get… read more

Do Any Of You With VWD Experience Petechiae And Fatigue?
A MyHemophiliaTeam Member asked a question 💭

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?

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A MyHemophiliaTeam Member

I am always tired and have petechiae in random places, not to many, they are on my chest and legs. Should I worry?

Intching, Pins And Needles On Face And Head
A MyHemophiliaTeam Member asked a question 💭

I’ve been having pins and needles and itching on my face and head from taking norco and methadone to manage my pain. Doesn’t anyone have a way to cope with it or any other information. I’ve tried other pain killers and can’t tolerate them as well as I do the opiates. I also smoke pot at night to deal with neuropathy and anxiety etc.

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A MyHemophiliaTeam Member

Certainly sounds very similar to my own, however, I have hemophilia factor VIII deficiency, severe...long winded way of saying that I have had problem which have resulted in my left knee being fused… read more

Physical Therapy
A MyHemophiliaTeam Member asked a question 💭

I do pilates 2-3 days a week. I also walk 3 days a week. I find this has helped keep the pain in my joints, and all around well-being more positive. My question is: Is this too much?

A MyHemophiliaTeam Member

If you enjoy it, you are not in pain and your levels are good I don't see why it would be too much. I think the stretching walking and strength training helps the joints and muscles

Joint Bleeds
A MyHemophiliaTeam Member asked a question 💭

I have von Willebrands disease. I really don’t know much about it. I was told its a relatively minor case but that’sall i know. I don’t know what to expect with this disease and have a lot of body pain and headaches. I’m not sure if any of this is from vwd or if it’smy other conditions.

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A MyHemophiliaTeam Member

I have VWD and have always been told it’s a Factor VIII deficiency.

Do Any Of You With Vwd Have Extreme Fatigue,joint Pain And Burning?
A MyHemophiliaTeam Member asked a question 💭

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.

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A MyHemophiliaTeam Member

Sounds like a joint bleed to me I have a target joint and that’s how it feels when it begins. Or to me it does.