Former Queer Eye and Interior Designer, Thom Filicia, along with Malignant Hematology Department at H. Lee Assistant Member, Dr. Andrew Kuykendall, joined Inside South Florida to share their personal experience with myelofibrosis and the resources available for patients through ‘Mapping Myelofibrosis.’
“My brother was diagnosed with myelofibrosis 10 years ago, and it came out of left field, he had no idea that this was you know, going to happen,” says Filicia. “And when he was diagnosed, we knew nothing. We had no idea what myelofibrosis was. And it was very difficult to get information in the beginning on really what it was, what it was and what to expect in and just what that journey was going to look like. So, it was very scary. And he was in a situation where he needed to take immediate action to deal with it. And I was quickly identified as the bone marrow donor, which was a great thing because I was his brother, I was younger than he was. And I was able, I was actually a perfect match.”
Dr. Kuykendall explained the unique symptoms and challenges of myelofibrosis, and how Mapping Myelofibrosis provides valuable information and support for patients.
“Patients can present with a variety of symptoms and no one patient is the same. I think that becomes a challenge for patients with a rare disease, variety of symptoms that they don't necessarily know if they're getting the right information,” says Dr. Kuykendall. “And that's what MappingMF.com does. It puts them in a place where they can get information, understand more about the disease and be their own best advocate moving forward.”
For more information, visit MappingMF.com
This Inside South Florida segment is paid for by GSK.