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After a patient is diagnosed with a rare disease such as a myeloproliferative neoplasm, learning about their condition and seeking expert clinicians can help put their mind at ease.
When it comes to rare diseases such as myeloproliferative neoplasms (MPNs), gaining an understanding of the disease and seeking a specialist for treatment can help patients feel more at ease with their diagnosis, explained Dr. Raajit Rampal, an associate attending physician at Memorial Sloan Kettering Cancer Center in New York City.
MORE: MPN Survivor Urges Clinicians, ‘Break (Info) Down to Me Where I Can Understand It’
MPNs are a group of rare blood cancers that many people have not heard of at the time of their diagnosis, according to Rampal, who was recognized at CURE®’s 10th Annual MPN Heroes® program in December. However, learning more about the disease and its treatment can help ease patients’ minds, as “uncertainty creates anxiety,” according to Rampal.
When it comes to developing new treatments and sparking new scientific discoveries in the MPN space, specialized doctors and researchers are essential, Rampal said.
“Sometimes (a patient will say), ‘You know, this disease is a one-in-a-million diagnosis.’ And I’ll say, ‘Yes, but you are the 10th or 11th person who I’m going to see today with it.’ That helps to further this type of research,” Rampal said in an interview with CURE.
Well, (there are) a couple of things, a couple of challenges.
No. 1 is education. You know, when patients get diagnosed … this is a rare disease, as I often say to the patients, “This is not something your neighbor has, you're not going to have a chat with them about that in all likelihood.” And oftentimes, what is lacking when we meet somebody who's newly diagnosed is them having an education about this disease, they, in most cases, have never heard of this. And the doctors who see them or their primary care doctors, they've read about it, they don't have seen many of these cases.
So part of our job is to educate them thoroughly. This is what you have, this is what it's about, these are the things we can do about it. That's partly just for the sake of education of patients, but partly because, to some extent, it relieves anxiety, right? Uncertainty creates anxiety. I'm a firm believer in that. And so, giving any type of education that will alleviate that or give somebody a better understanding will help with anxiety.
Now, on the other side of things, it's a rare disease, and how do you bring ideas forward? You're dealing with small numbers of patients, right? I think if you have good ideas, they are translatable. But it doesn't stop there. Because you're right, you can have a fantastic scientific idea. How are you going to get patients on to the study? Part of it is building a cohort and having a specialization. Doctors and researchers who are specialized in these diseases, this is most of what they see. Sometimes … (a patient will) say, “Well, you know, this disease is a one in a million diagnosis.” And I'll say “Yes, but you are the 10th or 11th person who I'm going to see today with it.”
That helps to further this type of research. It’s not everyone (who is) going to qualify for every trial. But if you don't have the numbers, you can't do the research. And so making sure that, you know, us, we, as specialists, have a focus in these diseases makes a difference and that allows us to bring concepts forward for clinical trials because then we have the patients who are going to be eligible.
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