What should patients know when they are first diagnosed with BPDCN?
Patients who are diagnosed with BPDCN and have almost universally told us that there is a slowing down of the world and kind of a shut down phase, because it is such a bizarre sequence of words that usually whoever's giving the diagnosis has never heard of it. I'm talking about if you get diagnosed in your local doctor's office, not necessarily at a major academic center, as most people are, and maybe three other things I can add to that.
One is usually obviously it's a rare disease. Maybe people haven't even heard of it. Most people are looking for something else. Melanoma of the skin. Skin cancers, maybe a skin lymphoma. There's one called cutaneous T cell lymphoma that most, most, marks have heard of. Sometimes maybe people were looking for an infection of some kind because they were given antibiotics or steroids and the skin lesion persisted, etc., etc. maybe people were looking for a benign skin condition. So there's a lot of shock, surprise, anger, disgust when they get this. And then as you said, why we're doing this interview in the first place. There's a dearth, there's a paucity of information, not much at all, really, when you look it up. There's a few official medical sites. Maybe you'll come across a video line, maybe you'll come across a technical paper of ours. So I think that's the first phase.
The second phase. Now with the more democratization of information, it wasn't the case 15-17 years ago. When I myself looked up online and found almost nothing about the disease. But now, at least with online, even the AI stuff, I've I've looked myself ChatGPT perplexity the AI they do have something on hand. Obviously when you do a normal internet search, Google and others social media, I'd like to give a shout out. There's a lot of pitfalls with social media, a lot of problems and issues, but at least in the early days we were able to start a hashtag hashtag BPDCN n not very original, but very there was a lot of spam with that, but we were able to connect directly with advocates, patients, caregivers through there and get referrals to folks where they needed to go. And their geography locations. And then the academic literature, of course, for folks who are inclined in that direction, there are search engines, you know, PubMed and others that are freely available to most people.
So I would say the second part is a little bit more satisfying, which is at least. And I saw myself that there was no information about there and have gone. The one said be the change you wish to see in the world. I think good quality information out there. And then third, I would say with this diagnosis, when you find out about it, patient or caregiver is to bring one other person if you can. Not everybody has that obviously, or be able to document notes, record the visit because it's such a complicated as it disease. Most doctors may not have seen it before.
And so the combination of allowing yourself space and grace to process such an unusual, difficult diagnosis has to be said out loud. I do encourage people to look up things as much as they can, but don't do it in isolation. Look it up, ready to discuss it with a healthcare provider, and then three try to connect with a healthcare provider such as our group or others, maybe at a major academic center who has heard of the disease, who's seen it, may have active clinical trials. That's for folks who are able to do that. At least in the beginning, you have a a consultation with a physician who does this. You know enough to have the the background to provide a treatment plan. That makes sense.
So I think finding where that place may be, and sometimes that's, that's referrals from the, the person who may be taking care of you locally and, and a shared care model. Sometimes it requires, the patients to take that initiative to, you know, to get online and to find, you know, where in their vicinity is a place that, that has a typically leukemia program that, would be appropriate.
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