Preview of the Sickle Cell Podcast

[00:00:00] I have felt pain every day of my life since the age of 11.

[00:00:03] I don't know a day without pain, but I've learned how to live with it.

[00:00:08] Thank you for listening to this preview of the Sickle Cell Disease Podcast,

[00:00:12] part of the Health Unmuted Audio Library by Mission Based Media.

[00:00:16] Sickle Cell Disease is the most common inherited blood disorder.

[00:00:19] It could cause extreme pain and depression,

[00:00:22] and stigma and the lack of accessible treatment make it a difficult one to treat.

[00:00:26] But developments and treatments are improving health outcomes and life expectancy.

[00:00:31] In each episode of this important mini-series, we hear from medical experts, caregivers,

[00:00:36] and people living with Sickle Cell Disease, and we share practical information to engage,

[00:00:41] educate, and empower listeners. For more information or to learn about how you can get

[00:00:46] involved, visit HealthUnmuted.com or drop us a line at info at HealthUnmuted.com.

[00:00:53] Sickle Cell Disease is a group of genetic disorders that affect red blood cells.

[00:00:59] Red blood cells usually are round shape like a jelly doughnut,

[00:01:04] but in people with Sickle Cell, the cells change shape

[00:01:08] like a banana or a chili pepper or like a farming tool called a sickle.

[00:01:13] This causes the cells to die early or block smaller blood vessels,

[00:01:17] which can lead to other complications.

[00:01:19] It leads to all this multi-system problems that is not just the blood cells, but also

[00:01:24] blood vessels, organ damage, a lot of pain and other problems.

[00:01:31] It can impact your brain. You have higher instances for stroke.

[00:01:35] We talk about all of this, including symptoms and risk factors in episode one.

[00:01:40] Sickle Cell Disease is predominantly a disease of people of African origin,

[00:01:44] Mediterranean, Middle Eastern, Indian. So people of color, but as time has gone on,

[00:01:50] it's not only people of color.

[00:01:53] In episode two, we learn how Sickle Cell is diagnosed.

[00:01:57] In the United States, Canada, large portions of Europe, Sickle Cell Disease is diagnosed

[00:02:03] with a newborn screening test. Early diagnosis is important because early

[00:02:08] interventions can keep children from getting very sick.

[00:02:11] It used to be that there was no prevention and children would just die of infection,

[00:02:17] of bacterial infection, of malaria infection.

[00:02:21] The leading thing that we try to do is to teach people to prevent infection,

[00:02:26] give immunizations to prevent infection, and also start some preventive antibiotics

[00:02:32] to slow down any bacteria that get past the immunizations.

[00:02:37] One of the most common symptoms of Sickle Cell is pain, which can come on in sudden episodes.

[00:02:43] Throughout the series, we hear from people living with Sickle Cell about their experiences.

[00:02:48] I can describe it as sometimes feeling like elephant is sitting on my chest,

[00:02:54] or like repeatedly slamming my finger in a car door.

[00:02:59] There are triggers like change of altitude, overexertion, or like temperature changes,

[00:03:06] sudden temperature changes. That's a recipe for a pain crisis.

[00:03:10] And in episodes three and four, we talk about treatments for Sickle Cell, including for pain.

[00:03:15] There's four that are approved right now. The older one is Hydroxuria,

[00:03:21] which makes the red blood cells more flexible. This is a daily medicine.

[00:03:25] We also cover blood transfusions, which increase the blood's oxygen-carrying

[00:03:29] capacity and reduce complications.

[00:03:31] My daughter's had 10 blood transfusions so far, and she's seven years old.

[00:03:38] And I have seen the difference that it makes when she gets that blood.

[00:03:43] A bone marrow transplant is currently the only cure for Sickle Cell disease.

[00:03:47] But there is some promising research in gene therapy, which we also learn about in the series.

[00:03:52] There's now ways to change the genetics of the blood-making cells in the bone marrow

[00:03:59] so that they don't make Sickle Cells anymore.

[00:04:02] Gene therapy, these curative therapies are not just on the horizon, they're actually starting to be here.

[00:04:09] Sickle Cell is an invisible disease, and there are still stigmas and barriers to accessing proper care.

[00:04:15] Something that is so very common in treating Sickle Cell disease is just waiting and not

[00:04:21] being seen or heard. You can't see my pain.

[00:04:24] So throughout this podcast, we hear from medical professionals and patient advocates who are working

[00:04:29] to spread awareness and education about Sickle Cell disease, including that help and support is available.

[00:04:36] You will find your purpose with living with Sickle Cell disease, and you will be able to

[00:04:40] accommodate and take care of yourself and be successful in that place, in that job,

[00:04:45] in that thing, in that relationship.

[00:04:48] It's not the end of the world. You just have to live life different.

[00:04:52] You can still live life differently, but you can still live life.

[00:04:56] This disease doesn't define you as a person. It is just part of your full identity.