The Pain Of A Sickle Cell Patient

So, let’s talk about the pain experienced by individuals with sickle cell disease…

When is the last time you’ve been to a hospital?

Living life with an ‘invisible’ disease, many sickle cell patients endure pain and discomfort that frequently goes unacknowledged and unnoticed. Many of these people are hospitalized an average of 3-6 times per year. However, due to the lack of visible symptoms, they often go undertreated.

It’s disheartening how patient care for this remains overlooked even though sickle cell disease is the most inherited genetic disorder in the United States.

But that needs to change, and so I’m here to shout from the rooftops today.

Join us as we start the National Sickle Cell Awareness Month with an episode talking about the life our sickle cell patients have to deal with every day.

Why you need to check out this episode:

Understand the life a lot of sickle cell patients deal with, especially with this ‘invisible’ disease;
Recognize the importance of not undertreating the pain experienced by sickle cell patients and believing them when they report pain, even when no visible signs are present; and
Gain awareness as to what pharmacological and non-pharmacological ways are there to help patients deal with the pain and discomfort brought on by the disease

“We need to not only recognize our patients with sickle cell disease, but we need to respect our patients with sickle cell disease; we need to trust our patients with sickle cell disease. All of these things need to happen if you are going to be the best healthcare provider you’re going to be. We can’t wait for the month of September to be talking about like, ‘Hey, let’s look out for our sickle cell patients’. Because again, sickle cell patients don’t only come to the hospitals in September.” – Dr. Berry Pierre

Topics Covered:

00:00 – On today’s episode: September is the National Sickle Cell Awareness Month, so let’s talk about sickle cell

00:59 – A decade as a physician: How in those years, the ones who always strike me the most are our sickle cell patients

02:04 – The life our sickle cell patients deal with: The outside doesn’t show how they’re suffering inside

06:26 – Some facts about sickle cell disease a.k.a. the most inherited genetic disorder

10:15 – Shouting from the rooftops: You can’t allow any preconceived notion to affect you from taking care of the patient in front of you

12:50 – Treatment options: Some pharmacological ways to deal with the pain and discomfort brought by sickle cell disease

13:57 – The non-pharmacological ways to take care of and treat sickle cell disease patients

[IMPORTANT DISCLAIMER: This does not work with everyone]

17:18 – Outro: Quick summarization and recap of today’s main points

Resources:

Notable Quotes:

“If a disease has a whole month dedicated to it, it is of importance; it is something that we need to keep very good track of.” – Dr. Berry Pierre

“It (the sickle cell disease) is the most inherited genetic disorder. Now, if I told you a disease was the most inherited genetic disorder, you would think that everyone would be on red alert when they’re taking care of these patients. But that, unfortunately, is not the case, and there is still a lot to learn especially from a patient care perspective.” – Dr. Berry Pierre

“It’s important to understand that your patient is there and needs to be taken care of by you. You can’t allow any preconceived notion or patients you might have dealt with to affect you from taking care of the patient in front of you.” – Dr. Berry Pierre

“The pain of sickle cell patients—treat it like you will be treating family. We are not in the position to undertreat the pain of our patients anymore. And if you ever needed any thought to say like, ‘Alright, is this sickle real? Is this something I should be worried about?’ Again, I repeat, it is the no.1 genetically inherited disorder.” – Dr. Berry Pierre

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