A while ago I wrote a column on a tough topic – bleeding disorders in the bedroom. How do you manage your bleeding disorder in intimate moments? This can be awkward to discuss, but it is a reality many in our community face.
About a year ago I came to a tough realization that there is inequity in access to hemophilia treatments. I was struggling with about a bleed a month, while some young men I knew (teens) were on a new drug (Hemlibra) and were bragging about being bleed free for six months – they played contact sports!
Do you have a service animal for your hemophilia? Have you considered one?
There are some people with mobility issues who use service dogs to assist them with mobility. Others look towards cats and dogs as emotional support animals. How do animals help you cope with hemophilia?
While I would never wish hemophilia and all its complications on anyone, I will say that I am thankful for many of the things I have gained on this journey. I wrote about my gratitude on the hemophilia journey. What are you thankful for on your hemophilia journey? Have you found gifts in unexpected places?
It is fairly common for women with hemophilia to have at least one other bleeding disorder. How many bleeding disorders do you have? Clotting disorders? Other things? How do they interact with each other? Have you been diagnosed? Do you see multiple specialists? Does your hematologist believe the other diagnosis?
At what age did you first test your children’s factor levels to see if there were issues? Did you do it at birth? After you realized they had a bleeding issue? Did you test your girls at a different time then your boys? When is the right time to test?
So called microbleeds are the bleeds that are silent, small, and destructive. It is believed that joint damage in hemophiliacs can be caused by microbleeds. Do you think microbleeds impact your joint health? Have you heard of microbleeds before?
Have you heard of Microbleeds? A study showed that women who carry a mutation for hemophilia have joint damage and range of motion limitation similar to male hemophiliacs. The damage is caused by microbleeds. Do you think microbleeds are real? Do you think your joint health is impacted by microbleeds? Are you on factor infusions for microbleeds?
I wrote this open letter to hemophilia parents a little over a year ago. I kept hearing so many parents, particularly moms, express a deep, heartfelt grief and guilt that they passed along the gene that caused their child to have hemophilia. Hemophilia is not anyone’s fault and we love our children and our community. Please check out the link to…[Read more]
Hemophilia does not have to stop someone from being active. There are many people with hemophilia who are quite athletic! They climb mountains, ride bicycles, and some even run marathons. I ride a recumbent bike @ 100 miles a week. I also love to walk and hike and I keep up with physical therapy to keep my knee strong. For me, prophylactic…[Read more]
Many parents struggle with the question “Could I pass hemophilia to my children?” Some parents do not realize they carry hemophilia and feel tremendous guilt when they learn they have passed it on. Other parents are okay with hemophilia continuing down the family line. There is no right or wrong answer here, but the questions abound. How do…[Read more]
Some people are surprised to learn that there are more bleeding disorders than hemophilia. Hemophilia A and B are the most well-known. There is also Hemophilia C, FXI deficiency, and many other bleeding disorders. Do you have a rarer bleeding disorder? How do you find support where you are the rarest of the rare?
Many women who struggle with heavy bleeding during menstruation have been offered access to birth control as a way of minimizing bleeding. Have you used birth control to assist with bleeding? How has it worked for you?
Some hemophiliacs find infusing factor makes them feel better all over, not just at the bleed site. Others describe factor infusions as pain medication. Some describe feeling tired and off kilter. How does factor make you feel? Do you find it causes a different side effect? How do factor infusions affect you?
Your Hemophilia Treatment Center can take care of your hemophilia needs, but you likely have additional Doctors who are not part of your HTC. Does your HTC get along with your other doctors? Are your other doctors willing to work with your HTC if needed? Do you have any experiences where your HTC had to work with other doctors?
Homeopathic medicine is practiced by people who are not traditionally trained, but are trained in Homeopathy. Have you used homeopathic medication? Do you see an Homeopathic Practitioner? Do you use homeopathy to treat your hemophilia? Any great salves or tinctures out there?
Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
This site is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.