Muscular Dystrophy
PodcastDX
This week we are speaking with a Muscular Dystrophy Warrior! Keisha Greaves is a motivational speaker, the founder of Girls Chronically Rock, and the Massachusetts State Ambassador for the Muscular Dystrophy Association (MDA). Girls Chronically Rock (www. girlschronicallyrock.com) offers inspired fashion celebrating Muscular Dystrophy and other chronic illnesses. Over the past few years, Keisha has been featured in Good Morning America, Today Show, WCVB Chronicle, ABC News, Thrive Global, Politico, Improper Bostonian, Boston Voyager, Herself 360, Liz on Biz, among other outlets on and...
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Rare Disease CAMK-2 Gene
PodcastDX
Our guest today is Karen is a wife and mother to 5 children. Her youngest, who is now 13 was born seemingly healthy. In her first weeks it became clear that she wasn't developing normally. After 10 years of looking for a diagnosis and not finding answers, they decided to do whole exome sequencing. That finally gave them an answer. She has a mutation of her CAMK2 gene. It was so newly discovered that only a handful of people were diagnosed with this. Since it has been discovered, more children are being found to be in the family of CAMK2 mutations. It is so...
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Effects of Agent Orange
PodcastDX
Tara Parham, the daughter of a disabled USMCS Veteran, eighty-sixed her 6 figure income career in Government Healthcare and Lean Six Sigma, after falling ill with the first of 3 rare diseases that are associated with her dads exposure to Agent Orange, a dioxin used while he was serving in the Vietnam War. Her goal is to shed light on those who are struggling with the many debilitating conditions from Agent Orange and other Rare Diseases; to advocate for those who are struggling to find Help, their voice, and are unable to advocate for themselves. TRANSCRIPT s8e10- PodcastDx-...
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Fibromyalgia & POTs
PodcastDX
Jason is an engineering graduate who reinvented himself as a podcaster and chronic illness/disability advocate after developing fibromyalgia and postural orthostatic tachycardia syndrome (POTS). He is the host of , a podcast featuring immersive stories on chronic illness and disability that showcase our vulnerability, wellness, and resilience. He and his guests find comfort by turning towards discomfort, welcoming it, and laughing at it. Jason is the youngest of three kids and the proud uncle of his nephew and niece. He was born and raised in Toronto, Canada where he currently lives...
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Fibrodysplasia Ossificans Progressiva
PodcastDX
Kim Shields is 38 years old and just finished her masters in social work program. She was diagnosed with FOP at age 15, but it has mildly affected her throughout her life. She is a wheelchair user, but she doesn’t let that slow her down. She is working on a plan to open a nonprofit in the future to help with access issues for those with disabilities, specifically wheelchair access, but will fight to help anyone with a disability get access to housing, employment, and transportation that meets their individual needs to be as independent as possible. ...
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Autoimmune & Tick Borne Illness
PodcastDX
Board Certified in Family Medicine, Dr. Kelley was among the first physicians to become Board Certified in Integrative Medicine. She has studied the causes, effects, and treatments of Lyme Disease extensively, and lectures nationally on this and other topics. Dr. Kelley graduated from The Ohio State University College of Medicine and completed her residency in Family Medicine at St. Joseph Hospital in Chicago. She is a ten-year member of the Institute of Functional Medicine (IFM), a Director on the board of The International Lyme and Associated Disease Society (ILADS), and is a...
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Household Safety
PodcastDX
Talking today amongst ourselves, we will share some important safety tips around the home. (TRANSCRIPT BELOW) Most home safety tips talk about the importance of preventing fires, preparing against extreme weather and protecting the home from potential burglars. If you are a homeowner and have not taken precautions in any of these areas, the time to act is now. Yet even though it’s important to prepare for large dangers, most household dangers are more subtle and require smaller fixes. For example, did you know that a carbon monoxide detector is one of the most important...
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Myostatin Issues- Dylan's Strength
PodcastDX
Myostatin-related muscle hypertrophy is a rare condition characterized by reduced body fat and increased muscle size. Affected individuals have up to twice the usual amount of muscle mass in their bodies. They also tend to have increased muscle strength. This condition is not known to cause any medical problems, and affected individuals are intellectually normal. Myostatin-related muscle hypertrophy is caused by mutations in the gene. It follows an pattern of inheritance. In layman's terms: Too LITTLE Myostatin causes too MUCH muscle. Our...
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Vaccines
PodcastDX
The first human vaccines against viruses were based using weaker or attenuated viruses to generate immunity. The smallpox vaccine used cowpox, a poxvirus that was similar enough to smallpox to protect against it but usually didn’t cause serious illness. Rabies was the first virus attenuated in a lab to create a vaccine for humans. Vaccines are made using several different processes. They may contain live viruses that have been attenuated (weakened or altered so as not to cause illness); inactivated or killed organisms or viruses; inactivated toxins (for bacterial diseases where toxins...
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Disability Etiquette
PodcastDX
Basic disability etiquette involves treating people with disabilities with respect. For example, speak to the person directly, not to the person accompanying them. Do not make assumptions about what they can or cannot do. The impact of a specific disability can vary widely from person to person, so offer assistance only if it appears to be needed. Acknowledge and respect the individual’s ability to make decisions and judgments on their own behalf. Always use “people first” language. For example, use the term “people with disabilities.” Do not use terms such as “the...
info_outlineMatt is a preschool teacher turned computer programmer and disability advocate. He developed Epilepsy while in college and is here today to discuss this often misunderstood disease.
Epilepsy is a central nervous system (neurological) disorder in which brain activity becomes abnormal, causing seizures or periods of unusual behavior, sensations, and sometimes loss of awareness.
Anyone can develop epilepsy. Epilepsy affects both males and females of all races, ethnic backgrounds and ages.
Seizure symptoms can vary widely. Some people with epilepsy simply stare blankly for a few seconds during a seizure, while others repeatedly twitch their arms or legs. Having a single seizure doesn't mean you have epilepsy. At least two unprovoked seizures are generally required for an epilepsy diagnosis.
Treatment with medications or sometimes surgery can control seizures for the majority of people with epilepsy. Some people require lifelong treatment to control seizures, but for others, the seizures eventually go away. Some children with epilepsy may outgrow the condition with age.