Best Sicklecellanemia Podcasts (2024)

1
Maria Mendoza's Story 37:10

1+ y ago37:10

37:10

Guest: Maria Mendoza, a parent and sickle cell disease advocate for her children and other families with SCD children. Maria has 2 children with SCD (Luis, 11 years old, and Andrea, 7 years old) and 1 with SCT. Maria stresses the importance of communicating with her children's teachers about their SCD condition and advocating for their needs. Lack …

1
Hope & Destiny With Dr. Allan Platt 32:45

1+ y ago32:45

32:45

Allan Pratt is the author of "Hope and Destiny," a book about sickle cell disease that aims to educate patients, families, and clinicians about the disease. The book was inspired by a lack of services for sickle cell patients in 1985 and was started by a mother who wanted to get a clinic started at Grady Hospital. The lack of education about sickle…

1
Hope And Destiny With Dr. Lewis L. Hsu 35:13

1+ y ago35:13

35:13

Hope and Destiny is available at: https://www.amazon.com/ https://hpcinternationalinc.com/bookstore Lewis Hsu co-authored "Hope & Destiny" with Allan Platt Jr. and James Eckman. The book aims to provide comprehensive education about sickle cell disease and accurate information about treatment regimens, medications, and medical insights to help pati…

1
Destiny Van Sciver 37:44

1+ y ago37:44

37:44

Destiny Van Sciver is the author of "Sickle Cell Superheroes" and a mother of a child with Sickle Cell Disease. She wants her book to empower people with the disease to live a good quality life and be the superhero of their own story. After her child had a negative experience at school, she donated books to the school. Her book is available on Amaz…

1
Megan Lippert 36:12

1+ y ago36:12

36:12

Hilton Publishing Co. specializes in health-related content. They collaborated with doctors to publish their first book on Sickle Cell Disease called "Hope & Destiny." The company has since published several other books on Sickle Cell Disease. Their mission is to make these books available to patients through medical providers and hospitals. Intere…

1
Shyala Pelmon, Living Well With Sickle Cell 8:52

1+ y ago8:52

8:52

Synopsis: In this episode, host Dwayne Golden speaks with sickle cell warrior and advocate Shyala Pelmon about what it means to live well with sickle cell disease. Charlotte shares her perspective on the importance of taking care of oneself through regular doctor visits, medication, and self-care practices, while also accepting and being at peace w…

1
Michelle Parr Story 9:58

1+ y ago9:58

9:58

Dwayne Golden interviews Sickle Cell Disease advocate and patient, Michelle Par Michelle shares her experiences growing up with Sickle Cell Disease and feeling different from her peers The difficulty of getting others to understand the severity of her pain and the importance of having a support system in place Michelle emphasizes the need to mainta…

1
Erica Whiterspoon Story 41:11

1+ y ago41:11

41:11

Erica Whitherspoon talks about her experience living with Sickle Cell on the SCD Stories podcast. Her parents didn't know much about the illness She was not able to do things like swimming in a cold pool and was always labeled as "the sick one." With the help of three supportive friends, she got through her teenage years. Erica feared being misjudg…

1
Spoonie Dating and Divorce 17:08

2+ y ago17:08

17:08

Episode 49: Spoonie Dating and Divorce In this episode, Jessica discusses the trials and tribulations of dating and divorcing while chronically ill. She ponders lots of questions about the "how to" or dating. Website Facebook Instagram Email Twitter Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a …

1
Spoonie Self-Care 20:42

2+ y ago20:42

20:42

Episode 48: Spoonie Self-Care In this episode, Jessica offers tons of cheap, quick, and easy suggestions for ways to fit in self-care for spoonies. Website Facebook Instagram Email Twitter Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don…

1
Distress Management Skills For Beating Pain and Burnout 30:01

2+ y ago30:01

30:01

Episode 47: Distress Management Skills For Beating Pain and Burnout In this episode, Jessica discusses distress tolerance/management strategies from Dialectical Behavior Therapy and how they can assist with pain, burnout, depression, and anxiety. She provides tons of practical tips. Website Facebook Instagram Email Twitter Please subscribe to our p…

1
Beating Pain and Spoonie Burnout Through Mindfulness 24:00

2+ y ago24:00

24:00

Episode 46: Beating Pain and Spoonie Burnout Through Mindfulness In this episode, Jessica discusses how mindfulness can benefit everyone and how it can help minimize pain, anxiety, depressed mood, and burnout. She provides tons of mindfulness strategies. Website Facebook Instagram Email Twitter Please subscribe to our podcast in the iTunes store, o…

1
The Spoonie Burnout 18:15

2+ y ago18:15

18:15

Episode 45: The Spoonie Burnout In this episode, Jessica discusses the reality of burnout when you have chronic illness. She discusses what it is, signs and symptoms, causes, and what to do about it. Website Facebook Instagram Email Twitter Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star re…

1
Advocacy In The Medical World 27:39

2+ y ago27:39

27:39

Episode 44: Advocacy In The Medical World In this episode, Jessica provides tons of useful tips and tricks for making medical appointments work for you, minimize gaslighting and discrimination, and minimize any mistakes or errors. Website Facebook Instagram Email Twitter Please subscribe to our podcast in the iTunes store, or wherever you find your…

1
Spoonie Self-Advocacy 38:05

2+ y ago38:05

38:05

Episode 43: Spoonie Self-Advocacy In this episode, Jessica discusses tips and tricks for advocating for yourself on a daily basis, with yourself, friends, family, work, and the community. Website Facebook Instagram Email Twitter Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to hel…

1
Spoonie Parenting of Special Needs Kids 26:24

3y ago26:24

26:24

Episode 42: Spoonie Parenting of Special Needs Kids In this episode, Jessica provides updates on the struggles of being a parent with a chronic illness/disability while also raising two children with special needs. She talks about the state of finances for children and adults with chronic needs, the difficulty of finding adequate treatment, and liv…

1
Using Massage and Movement for Pain Management With Guest Sam Visnic 53:44

3y ago53:44

53:44

Episode 41: Using Massage and Movement for Pain Management With Guest Sam Visnic In this episode, guest Sam Visnic discusses using physical therapy, movement, and massage therapy to assist with chronic pain management. When working with a new client, he always starts with a thorough evaluation and plan. He stresses the importance of sleep on reduci…

1
Darren Radke's Experience Living With Lupus and Antiphospholipid Syndrome 52:20

3y ago52:20

52:20

Episode 40: Darren Radke's Experience Living With Lupus and Antiphospholipid Syndrome In this episode, guest Darren Radke shares his experience living with Lupus and Antiphospholipid Syndrome. He also was diagnosed as a having a hippocampal cyst in his brain, an issue with a heart valve, and a lung issue. His symptoms initially came on really fast,…

1
The Ins and Outs of Antiphospholipid Syndrome With Guest Dr. Jill Schofield 1:06:05

3y ago1:06:05

1:06:05

Episode 39: The Ins and Outs of Antiphospholipid Syndrome With Guest Dr. Jill Schofield In this episode, guest Dr. Schofield discusses Antiphospholipid Syndrome. APS is a complex multisystem autoimmune disease. It is often comorbid with Lupus. It can be primary or secondary. Females are more likely to have APS than males. It tends to occur more in …

1
Updates, Crises, and Overwhelm 38:12

3y ago38:12

38:12

Episode 38: Updates, Crises, and Overwhelm In this episode, Jessica gives updates on her life and the life of her family. She discusses updates on her health conditions and recent surgery, crazy stressors, and mental health difficulties that accompany autism. She discusses how hard it is to get good medical care and how impossible it is to get adeq…

1
Treatment and Management of Ehlers Danlos With Guest Dr. Alissa Zingman 1:01:05

3y ago1:01:05

1:01:05

Episode 37: Treatment and Management of Ehlers Danlos With Guest Dr. Alissa Zingman In this episode, Dr. Alissa Zingman discusses management and treatment of Ehlers Danlos Syndrome. Dr. Zingman started to have symptoms of EDS in elementary school, with stomach aches and heel pain. She was very athletic and danced, but kept getting injured and havin…

1
Kim "Kid" Curry's Story of Living With Multiple Sclerosis 49:04

3y ago49:04

49:04

Episode 36: Kim "Kid" Curry's Story of Living With Multiple Sclerosis In this episode, Kim "Kid" Curry discusses his experience with Multiple Sclerosis. Early on in his career, he started feeling stinging sensations in his legs, but he wrote it off as possibly being bitten by fire ants. Later, his eyes were an issue, he was having difficulty with m…

1
Boronia Fallshaw's Story of Living With Vulvodynia 1:01:24

3y ago1:01:24

1:01:24

Episode 35: Boronia Fallshaw's Story of Living With Vulvodynia In this episode, Boronia Fallshaw discusses her experience with vulvodynia. Beginning with her first experience with intercourse at age 18, Boronia began to experience vulvodynia. In this condition, every time a person has sex, it feels like they have razor blades inside them. The pain …

1
Health Coaching For Teens With Guest Denise Archilla, MSW 51:47

3y ago51:47

51:47

Episode 34: Health Coaching For Teens With Guest Denise Archilla, MSW In this episode, guest Denise Archilla discusses chronic illness coaching! Some struggles young folks with chronic illnesses face include unpredictability of age during a time of transition, trying to blend in with peers, social media, people being able to video tape mistakes, ac…

1
Paul Forchione's Story of Living With Cerebral Palsy 41:20

3y ago41:20

41:20

Episode 33: Paul Forchione's Story of Living With Cerebral Palsy In this episode, Paul Forchione shares his story of living with Cerebral Palsy. He was diagbnosed with CP at 2-3 months old. The CP affects mostly his right side. He started physical therapy on a daily basis, which allowed him to learn to walk. Surgery on the tendon on the right side …

1
Hannah Budde's Story of Hypermobile Ehlers Danlos Syndrome and Mild TBI 1:06:59

3y ago1:06:59

1:06:59

Episode 32: Hannah Budde's Story of Hypermobile Ehlers Danlos Syndrome and Mild TBI In this episode, guest Hannah Budde shares her story with mTBI and hypermobile EDS. She also has POTS, pelvic floor dysfunction and prolapse, interstitial cystitis, craniocervical instability, asthma, and thoracic outlet syndrome. She has experienced several head in…

1
Dafne Wiswell's Story of Raising Children With Type 1 Diabetes and Ankylosing Spondylitis 49:25

3y ago49:25

49:25

Episode 31: Dafne Wiswell's Story of Raising Children With Type 1 Diabetes and Ankylosing Spondylitis In this episode, Dafne Wiswell discusses her son’s experience with Diabetes Type 1 and her daughter’s experience with juvenile arthritis and Ankylosing Spondylitis. Her son was diagnosed with Diabetes when he was 2. He started having accidents, dri…

1
Dafne Wiswell's Story of Rheumatoid Arthritis and Hashimoto's Thyroiditis 38:18

3y ago38:18

38:18

Episode 30: Dafne Wiswell's Story of Rheumatoid Arthritis and Hashimoto's Thyroiditis In this episode, Dafne Wiswell shares her story of Rheumatoid Arthritis and Hashimoto’s Hypothyroidism. Through diet, spirituality/faith-based practices, setting boundaries, and practicing forgiveness, she was able to eliminate Rheumatoid Arthritis from her experi…

1
Raising a Child With Marfan Syndrome With Guest Allison Pullins 1:02:36

3y ago1:02:36

1:02:36

Episode 29: Raising a Child With Marfan Syndrome With Guest Allison Pullins In this episode, Allison Pullins discusses her experience raising a child with Marfan Syndrome. James was diagnosed with this connective tissue disorder when he was 2 years old. He experiences an aortic aneurysm, is very nearsighted, has dislocated lenses in his eyes, and l…

1
David Einsohn's Story With Ankylosing Spondylitis 41:40

3y ago41:40

41:40

Episode 28: David Einsohn's Story With Ankylosing Spondylitis In this episode, we discuss David Einsohn’s story with Ankylosing Spondylitis. David started experiencing problems with his legs and back when he was almost 10. He started having difficulty breathing, weakness in his legs, lower back pain, and stiff hips. Doctors initially suspected poli…

1
Making Physical Therapy Work For Ehlers Danlos Syndrome with Guest Dr. Logan Swisher 1:08:02

3y ago1:08:02

1:08:02

Episode 27: Making Physical Therapy Work For Ehlers Danlos Syndrome with Guest Dr. Logan Swisher In this episode, Dr. Logan Swisher discusses physical therapy and Ehlers Danlos Syndrome. EDS is a connective tissue disorder that affects the person’s whole body. Symptoms can range from mild to debilitating. Our joints are supported by ligaments, tend…

1
Amanda Semenoff's Story of Living With Crohn's Disease 1:02:32

3y ago1:02:32

1:02:32

Episode 26: Amanda Semenoff's Story of Living With Crohn's Disease In this episode, Amanda Semenoff discusses her experience with Crohn’s disease. Misdiagnoses included psychiatric conditions, lupus, pregnancy, eating disorders, and stress. She found that once she had a formal diagnosis, doctors started to take her complaints more seriously and tre…

1
Alex Haut's Story with Ehlers Danlos Syndrome 41:46

3y ago41:46

41:46

Episode 25: Alex Haut's Story with Ehlers Danlos Syndrome In this episode, Alex Haut discusses her experience with growing up with Ehlers Danlos Syndrome, arthritis, and ulnar nerve entrapment. She also has GI and liver issues. She was diagnosed by her pediatrician when she was in elementary school. She was shocked to be told she had the condition …

1
Let's Talk About Crohn's Disease 11:26

3y ago11:26

11:26

Episode 24: Let's Talk About Crohn's Disease Crohn’s Disease is one type of inflammatory bowel disease and differs by person. Symptoms include diarrhea, fever, fatigue, abdominal pain and cramping, blood in the stool, mouth sores, reduced appetite, weight loss, inflammation of the skin, eyes, and joints, inflammation of the liver or bile ducts, kid…

1
An Insider's Look At MAST Cell Activation Syndrome With Guest Dr. Jill Schofield 1:08:50

3y ago1:08:50

1:08:50

Episode 23: An Insider's Look At MAST Cell Activation Syndrome With Guest Dr. Jill Schofield In this episode, Dr. Jill Schofield discusses MAST cell activation syndrome. MAST cells are used to fight off foreign invaders and are present in all areas of the body, but most in the GI tract, genitourinary tract, skin, and sinus system. When they go awry…

1
EP #9 The Elle Cole Story 42:03

3y ago42:03

42:03

Elle is a recipient of a Bronze Congressional Award and has been featured on NPR, ABC 7, BBC World Service Radio, and a guest on many podcasts. She is a writer, motivational speaker, and social media strategist. CleverlyChanging.com and the Cleverly Changing podcast are a go-to resource on health, wellness, finances, and parenting. She is also a pa…

1
Let's Talk About Complex Regional Pain Syndrome 10:44

3y ago10:44

10:44

Episode 22: Let's Talk About Complex Regional Pain Syndrome Complex Regional Pain Syndrome is a condition defined by prolonged pain and inflammation following an injury to the arm or leg. Symptoms include constant or fluctuating pain after contact or use, changes in skin temperature, skin color, swelling of the affected limb, abnormal sweating and …

1
Managing Chronic Pain With Dr. Linda Bluestein 1:12:35

3y ago1:12:35

1:12:35

Episode 21: Managing Chronic Pain With Dr. Linda Bluestein In this episode, Dr. Linda Bluestein discusses Ehlers Danlos Syndrome, Fibromyalgia, and chronic pain. Dr. Bluestein noted that it took her over 40 years to get diagnosed with EDS, and once her symptoms caught up with her, she made a career shift to help individuals with EDS. Shortly after …

1
Let's Talk About Trigeminal Neuralgia 8:44

3y ago8:44

8:44

Episode 20: Let's Talk About Trigeminal Neuralgia Trigeminal neuralgia is a chronic pain condition that affects the trigeminal nerves. Symptoms include bouts of facial pain, aching and burning in the face, and pain that gets worse over time. It is usually caused by disruption of function of the trigeminal nerve, aging, multiple sclerosis, a tumor, …

1
EP #8 National Sickle Cell Day, The Toneisha Harris Story 19:25

3y ago19:25

19:25

Toneisha Harris was the first African American female to make it as far as she did on NBC's The Voice, and is releasing a new single called “Let’s Change The World”. Toneisha has a message of encouragement for individuals and families of the sickle community.By Dwayne Golden, Giant Foods, SCPASCC, Toneisha Harrs

1
Monica Michelle's Story With EDS, CRPS, MCAS, and POTS 1:20:36

3y ago1:20:36

1:20:36

Episode 19: Monica Michelle's Story With EDS, CRPS, MCAS, and POTS In this episode, Monica Michelle discusses her chronic illness story with EDS, MCAS, POTS, Fibromyalgia, CRPS, and more. Monica and Jessica go on a lot of fun soap-box rants about the state of healthcare and disability. They discuss the use of mobility aids, and awesome tips and tri…

1
Let's Talk About Postural Orthostatic Tachycardia Syndrome 11:07

3y ago11:07

11:07

Episode 18: Let's Talk About Postural Orthostatic Tachycardia Syndrome In this episode, we discuss all things POTS. POTS is a type of dysautonomia. The episode discusses the autonomic nervous system as well as the sympathetic and parasympathetic nervous systems and how they play a role in dysautonomia. Symptoms vary widely by person but can include…

1
Dawn Veselka's Story of Raising a Child With Mixed Connective Tissue Disease 1:11:48

3y ago1:11:48

1:11:48

Episode 17: Dawn Veselka's Story of Raising a Child With Mixed Connective Tissue Disease In this episode, guest Dawn Veselka discusses her experience raising a daughter with a mixed connective tissue disorder. Her mix is juvenile arthritis, scleroderma, Raynaud’s and dermatomyositis. Sadie’s triggers are exposure to viruses, sunlight, and certain f…

1
Let's Talk About Marfan Syndrome 6:24

3y ago6:24

6:24

Episode 16: Let's Talk About Marfan Syndrome In this episode, we discuss all things Marfan Syndrome. Marfan Syndrome is a genetic condition that affects the connective tissues. Symptoms include long arms, legs, and fingers, tall and thin body type, curved spine, chest sticking out or in, flexible joints, flat feet, stretch marks, heart conditions, …

1
Lara Bloom's, of the Ehlers Danlos Society, Story With Ehlers Danlos and Associated Syndromes 1:08:48

3y ago1:08:48

1:08:48

Episode 15: Lara Bloom's, of the Ehlers Danlos Society, Story With Ehlers Danlos and Associated Syndromes In this episode, President and CEO of the Ehlers Danlos Society, Lara Bloom shares her story of living with Ehlers Danlos Syndrome. She was diagnosed with EDS at age 24, but was initially misdiagnosed with Marfan’s Syndrome. It took 12 years fo…

1
Let's Talk About Sickle Cell Disease 6:43

3y ago6:43

6:43

Episode 14: Let's Talk About Sickle Cell Disease In this episode, we discuss all things Sickle Cell Disease. Sickle Cell Disease is an inherited red blood cell disorder in which there aren't enough healthy red blood cells to carry oxygen throughout the body. There are multiple types of the disease. Symptoms include pain, swelling of the hands and f…

1
Smooth Sailing Spoonie ER Visits With Guest Dr. Harvey Castro 47:34

3y ago47:34

47:34

Episode 13: Smooth Sailing Spoonie ER Visits With Guest Dr. Harvey Castro In this episode, we discuss making ER visits more smooth sailing for spoonies and zebras. Guest Dr. Harvey Castro feels that it is important for the ER docs to spend adequate time with the patient, and for the patient not to have to tell their story repeatedly while in the ER…

1
EP #7 The Debra Brizzard Story 21:04

3y ago21:04

21:04

Debra is one of only a few assigned social workers for an agency in the commonwealth of Pennsylvania since most agencies use rotating social workers at clinics and hospitals.By SCPASCC, Debra Brizzard, Giant Foods, Dwayne Golden

1
Let's Talk About Endometriosis 9:03

3y ago9:03

9:03

Episode 12: Let's Talk About Endometriosis In this episode, we discuss all things Endometriosis. Endometriosis is a painful disorder where the tissue that typically lives inside the uterus begins to grow outside the uterus. Symptoms can include pain, urinary or bowel symptoms, fatigue, infertility, changes in menstruation, and many others. There ar…

1
Shayla Symone's Story With Ehlers Danlos Syndrome and Racial Discrimination 1:16:41

3y ago1:16:41

1:16:41

Episode 11: Shayla Symone's Story With Ehlers Danlos Syndrome and Racial Discrimination In this episode, we discuss Shayla Symone’s story with Ehlers Danlos Syndrome. She also has POTS, IBS, and Fibromyalgia. Shayla began to experience symptoms of EDS when she was in elementary school and was formally diagnosed in 2018/2019, a span of almost 15 yea…

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Sicklecellanemia Podcasts

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