Michelle Woehrle, Executive Director Of The Mpn Research Foundation.
The Initial Climb to a Myelofibrosis Diagnosis
Climbing the first hill of a rollercoaster can seem like an anxiety-filled eternity. Similarly, for people with myelofibrosis, anxiety in the early stages of the disease often stems from the unknown they face.
Myelofibrosis is a rare disease and getting a diagnosis may be a challenge in part because it is so rare. For every 100,000 people in the United States, only 0.3-1.5 people are affected. As a result, only a few specialists are intimately familiar with the complexities of diagnosing and treating the disorder. Meanwhile, patients are referred to various physicians and can wait an average of 2.5 years before receiving an accurate diagnosis.
“Some patients get an initial misdiagnosis or get a suggestion that they have nothing to be concerned with,” said Woehrle. “That’s why we’re working to better educate patients and their healthcare providers on what myelofibrosis looks like.”
It’s also not easy to pinpoint the type of patient who is at risk, according to Woehrle. “A common misconception is that myelofibrosis is an old person’s disease. But it can occur at any age, although it usually affects individuals more than 50 years of age. It can be a shock for them to discover that they have such a serious illness.”
