I don’t think anyone likes having a chronic disease. I have good days, and I have bad days. Thankfully, the good days outnumber the bad ones. There are days when I tolerate having hemophilia, days when I can step back and see the gifts that have come from…
Search results for:
A summary could not be generated for your search query. Here are some search results.
AI-generated summaries are for informational use only, based on content from multiple pages. They may not reflect full context. For complete details, see the original sources. Consult a qualified healthcare professional for medical advice.
Over the past few years, I have learned that bleeding disorders are complex, particularly for women. Hemophilia is not always easy to understand or treat. It can take women up to 16 years to receive an accurate diagnosis. Then treatment plans are created, which can be challenging…
Last week, I met a new local hematologist. He is not my main hemophilia doctor, but with my hemophilia treatment center eight hours away, it helps to have a local connection. He is a hematologist/oncologist who specializes in cancer treatment and knows very little about hemophilia.
When I have the opportunity to gather with my brothers and sisters from the hemophilia community, I notice we all have stories to tell. When you live with a rare disease, you are bound to have unique interactions with medical providers, family members, friends, and colleagues. These interactions range from…
I visited a hemophilia treatment center for the first time in the 1980s, to have my factor levels tested. The phlebotomist couldn’t find a vein, and I was distraught. Workers ended up pinning me down to get my blood. The result was that my factor…
The World Federation of Hemophilia states that any person, male or female, with factor levels below 40 percent has hemophilia. However, conventional medical wisdom has not caught up. Women who have abnormal bleeding should be assessed for hemophilia, particularly when they have a family history. Yet too…
Since hemophilia was discovered, it has been accepted as a male disease. No one questions that a man is struggling with hemophilia. A man with a bleeding disorder living in a developed country is rarely denied access to healthcare. When he receives a diagnosis, he is told that…
I am writing to you on behalf of all the women with a hemophilia mutation. My blood sisters have varying medical diagnoses: asymptomatic carrier, symptomatic carrier, mild hemophilia, moderate hemophilia, and even severe hemophilia. Their diagnosis is often linked to the philosophies of their hematologist or hemophilia treatment center.
An opportunity arises Five years ago, Ashley Gregory was asked to head The Female Factor (TFF), a program sponsored by the Hemophilia Foundation of Northern California (HFNC). According to Ashley, this opportunity brought her out of her shell and helped her to discover an affinity and…
Dear Hemophilia Parent, Today, I write to you. I am a child with hemophilia. I am taking the liberty of speaking on behalf of your child, who may be 2 days, 2 years, or 20 years old. First and foremost, you are awesome, and I…