May 17, 2017

Hemophilia


Here’s a free collection of resources about hemophilia- Hemophilia blogs, videos, support groups, first-hand experiences and advice from people who have hemophilia, etc.

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Hemophilia Blogs

Here’s a list of hemophilia blogs- blogs written by hemophiliacs, or about hemophilia.

****Email alexbalinski@gmail.com to submit your blog to this list.***

Hemophilia Is For Girls hemophiliaisforgirls.blogspot.com 2017
Hemophilia  Federation of America Mothers’ Blog hemophiliafed.org 2017
2 Brothers with Hemophilia 2brotherswithhemophilia 2017
Sweet Affliction sweetaffliction.com 2015
Adventures of a Hemophiliac adventuresofahemophiliac.blogspot.com 2013

Hemophilia Support Groups

Hemophilia Support Groups On Facebook

  1. Hemophilia Mother Group (4871 members)
  2. Hemophilia Advocates – Philippines (1883 members)
  3. Living with Hemophilia (594 members)
  4. Canadian Hemophilia Society – Southern Alberta Region (486 members)
  5. Our Kids with Hemophilia (467 members)
  6. Hemophilia Outreach of El Paso (291 members)
  7. Hemophilia Adoption (207 members)
  8. Hemophilia Patient Group – Blood Brothers (191 members)

Other Hemophilia Support Groups And Forums

  1. Daily Strength Hemophilia Support Group (31 members, 55 posts)

Hemophilia Survey

We’re surveying people about their experiences with hemophilia. Here will be a collection of their responses.

*This information is not meant to replace medical advice, and the information gathered via surveys may or may not be correct. Hopefully it will be helpful to you!

*Response format = Answer (Name, Age)


**Click here to share your experience with hemophilia**


Hemophilia Symptoms

What symptoms have you experienced?

  • Joint bleeds and blood clots in his mouth. (Julian H., 10 years old)
  • Bruises in any part of the body. (Clyde G., 11 years old)
  • Arthritis. (Halil B., 23 years old)
  • Swollen ankles, knees, hip, elbows, shoulder. I had a brain aneurysm in June of 2012- thanks to my wife I’m still here!! (Isaias G., 56 years old)

Hemophilia Facts

What are some facts you’ve learned about hemophilia?

  • I have learned that hemophilia is manageable as long as one is on their factor meds. Hemophilia is not curable. (Julian H., 10 years old)
  • Hemophilia is a genetic disease. (Clyde G., 11 years old)
  • I learned it can be overcome with patience and time. I’m going through pain management which helps. (Isaias G., 56 years old)

Hemophilia Pain Management

What are effective ways to manage your pain? (if applicable)

  • Rice…and Tylenol, and factor meds. (Julian H., 10 years old)
  • Drink medicine like hemostan, put an ice pack on bruises. (Clyde G., 11 years old)
  • Infusing when I have pain, and cold ice. (Halil B., 23 years old)
  • Like I said pain management, some factor and don’t stop moving- even in pain and soreness. My great grandfather lived to be 92 years old with severe hemophilia A. (Isaias G., 56 years old)

Hemophilia Difficulties

What are hard aspects of living with hemophilia?

  • Having episodes. (Julian H., 10 years old)
  • Being absent in school whenever I have joints bleed or bruises on my body. (Clyde G., 11 years old)
  • “Living”. (Halil B., 23 years old)
  • Trying to explain it to someone who doesn’t understand. (Isaias G., 56 years old)

Hemophilia Advice

What words of encouragement/advice can you share with others with hemophilia?

  • To have patience, and have faith that your episode will pass. (Julian H., 10 years old)
  • Don’t let yourself down, and stay strong for your family, and stay positive always. (Clyde G., 11 years old)
  • You live when there are infuses. (Halil B., 2 years old)
  • I always had friends when I was a teenager- a real good friend who knew my limits, and family who is always there with encouragement!!!❤ (Isaias G., 56 years old)

Hemophilia Diet and Exercise

What’s been your experience with diet and exercise?

  • His diet is pretty good….and he can exercise, he just needs to take a lot of breaks. (Julian H., 10 years old)
  • I eat good, believe me. I ride a stationary bike 20 miles a week, lift light weights every morning, even when I’m sore!! (Isaias G., 56 years old)

Hemophilia Treatments

What’s been your experience with treatments (medication, etc.)?

  • He is good, and getting his meds. We do prophy three times a week. (Julian H., 10 years old)
  • It’s very expensive, and sometimes the medicines are not available in other hospitals. (Clyde G., 11 years old)
  • The treatment is always going to be there, for me it’s been about three years since my last infusion. Exercise as a routine helps me ! (Isaias G., 56 years old)

Hemophilia Recommendations

Anything you’d recommend for someone with hemophilia?

  • It’s hard to just say one thing, because it all depends on the episode. (Julian H., 10 years old)
  • You could join the nearest Hemophilia Group that you have in your area. (Clyde G., 11 years old)
  • Don’t try to be equal. (Halil B., 23 years old)
  • Don’t be limited to what you can’t do, because there’s a thing out there that doesn’t have limits! (Isaias G., 56 years old)

Hemophilia Resources

What specific resources have you found most helpful?

  • Experience and my hemo department is awesome. (Julian H., 10 years old)
  • Joining a foundation with hemophilia patients in our area. (Clyde G., 11 years old)
  • My physicians. I check in four to five times a year so they can check my progress. Life gets pretty normal when you take your medication and you factor (VIII) when needed! (Isaias G., 56 years old)

Hemophilia Stories

Share an experience you’ve had related to living with hemophilia.

  • Just recently he had a blood clot on his gum. After he got his teeth cleaned from the dentist. (Julian H., 10 years old)
  • Living in the 70s when cryo was the infusion, and putting a cast on your ankle, and a body cast just to keep your joints from moving. I’ve smoked pot for over thirty years. My hemophilia rarely interferes with me. I worked for a construction company for over 25 years, I stop smoking pot two years before my brain aneurism. Now I smoke only when I hurt or am in some pain. (Isaias G., 56 years old)