Hemophilia
Questions + Answers
How did your loved ones react when they learned about your condition?
I encouraged my siblings to read up on Von Willebrands and we talked about symptoms to be aware of. We discussed testing for family members. Our genetic… read more
Mussel Spasms
Last night my son got a few mussel spasms .... is this a concern? Is this a symptom of a brain bleed that might have been missed? My son is sever Hemophilia Type A
Is anyone making use of affordable hand held infra red vein viewer devices to assist with seeing your viens.
I have used large costly mobile vein viewer devices in hospital.
I have found other more affordable hand held devices on the web.
Please share any experiences you may have had with your recommendations.
If possible also supply manufactures name and model number of the device.
Thanks
I would also like to know the cost and if it is worth it .... will soon need to infuse my baby at home and I think this will help allot. Where did you… read more
What advice would you share to help make infusions go more smoothly?
Drink plenty of fluids the day before. Fluids will make your veins distend and it will make it easier for the nurse to access the vein. I always take… read more
How do you deal with the emotions related to your bleeding disorder?
its not easy to have to get a permission slip from the doctor when you tell your dentist or surgeon that you have a bleeding disorder. I look at it as a… read more
Do you have a “Go” bag prepared if there is a need for an emergency evacuation? Any advice you would share?
What is your story of how you (or your child) were first diagnosed?
My diagnosis came as a result of: emergency surgery due to tonsillitis.
They said I had very big clots,but none would hold.
So after an extended stay at… read more
What do you wish others would understand about living with hemophilia?
The pain and the suffering that we have to go through. They really need more education to understand hemophilia. Even doctors don't know about… read more
I don'know if i fit in. I have factor 5,8 and 10
I only take coumadin, i am hearing different treatments from reading others comments. I don't know that i have a lot of questions. I will as i go on, i just want to fit in. I have a hemotologist at the U of M Minnesota. My Dr. Is suppose to specialize in these types of blood disorders. But he has said to me these 3 together are rare. I also have Stills disease which is an autoimmune disease. It is also rare. I was a nurse and a Social Worker very busy and needed. Now… read more
Oh hun that's rough. To have all three definitely has to be hard. I have factor 8. Stay strong tho. How long have you known?
How do you handle your condition at work? Is your boss understanding?
i have problems with authority because of the tasks that require physical labor at work which aren't acknowledged on a personal level in basic team… read more