Patients who are living with MPN should live a healthy lifestyle and not compare their disease to others, because of variability between mutations, according to an expert.
Patients should stay informed on the diagnosis, genetics and biology of their MPN disease to better understand treatments and keep themselves healthy throughout their disease.
“I think, the more the patient understands the disease, understands the issues, the more vested they are and engaged they are in doing everything they can to be as healthy as they can,” said Dr. Ann Mullally, an associate professor at Harvard Medical School, in an interview with CURE®.
Mullally presented on the basics, genetics and biology of MPN at CURE®’s Educated Patient® MPN Summit. She explained that understanding the genetics and subtypes of the disease are important for a patient because of the risks that come with it. Risks for thrombosis (blood clots block veins or arteries), blood clotting or other manifestations that come with MPN are different depending on the mutation.
In general patients with MPN are living longer periods of time, Mullally links this to early diagnosis, as well as better management of the disease. She says that over time, there has been better management, and reduced risk, of thrombosis and vascular events with the help of new treatments; she mentions JAK2 inhibitors that are approved for the treatment of myelofibrosis and are associated with longer survival.
For patients with MPNs, she mentions it is important to stay healthy and try to avoid the comorbidities that may develop. Patients should keep a healthy lifestyle, exercise, maintain a healthy diet, keep weight under control and to reduce vascular disease patients should be controlling their blood pressure, cholesterol, blood sugar and being continue the use of aspirin, if discussed with their treatment team.
In addition, when managing the disease long term, it is important for patients to have good relationships with their primary care and MPN doctors. Having a good long-term relationship with a doctor can help a patient understand their individual situation better over time, she said.
Mullally mentioned that after a diagnosis there is a psychological adjustment for patients, and this diagnosis can bring anxiety. Patients often go from being healthy to then having to manage and worry about the disease and concerns that are associated with it.
“I think a big part is after the initial diagnosis there’s a big adjustment of coming to terms of living with a chronic disease,” she said.
Patient support groups are “tremendously helpful,” but patients should remember that there is a lot of variability in the disease, Mullally mentioned. She said that although a patient might meet another person who has the same disease and mutation, there may be aspects of the diseases that are different. It’s important to keep this in mind because a patient might get anxiety or worry about things that actually may not be relevant to their disease.
“I’m optimistic that we’re making progress all the time and improving our understanding of these diseases and trying to move that towards better therapies,” she concluded.
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