On this week's show we are speaking with Kristine Hoestermann, the founder of "FindYourRare" and she will be explaining how she was diagnosed with HEDS and where that diagnosis took her!

Heeeeere's Kristine!

Allow me to introduce myself🦓My name is Kristine (kk). I am the CEO of RARE.™ A brand that was born from my own frustrations following the onset of my symptoms in 2016. It never occurred to me I could...

Food allergy is an immune system reaction that occurs soon after eating a certain food. Even a tiny amount of the allergy-causing food can trigger signs and symptoms such as digestive problems, hives or swollen airways. In some people, a food allergy can cause severe symptoms or even a life-threatening reaction known as anaphylaxis.

Food allergy affects an estimated 6 to 8 percent of children under age 3 and up to 3 percent of adu...

This week we will be discussing stroke awareness.

More than 800,000 strokes happen each year in the United States. Stroke is the fifth leading cause of death in the U.S. and is a major cause of serious disability for adults.

A stroke is caused by blocked blood flow to the brain and can affect a person’s speech, movement, memory, and more. It’s important to know the signs of a stroke and get help quickly. Some of the warning signs ...

Dr. Eugenie Hsu is a clinical psychologist by profession and lives in the San Francisco Bay Area with her husband and two children. In 2011 when her son was 8, he was diagnosed and treated for a craniopharyngioma brain tumor: Grateful for his survival but distressed by the many challenges he suffered in the aftermath of the tumor and surgery, Eugenie became focused upon finding solutions and treatments to improve his and other surv...

Brandi McAlexander was born and raised in Kirtland, New Mexico, a small town ten miles from the Navajo Native American Reservation. She is both Oglala Sioux and White Stick Creek.

She is happily married to a veteran of two tours to Iraq. Together they have a happy full house with seven children; four girls and three boys.

She worked in healthcare as a C-Suite executive for twenty years before deciding to change careers to a Juris ...

Today, we have with us today, Sheila Ames a registered nurse in Northern California who has been diagnosed with a rare type of a primary immunodeficiency known as common variable immunodeficiency or CVID for short.  At the time of her diagnosis she was working as an ICU nurse and her first doctors order was: no more exposure to infectious patients.  This diagnosis not only changed her career dramatically, it led her to following he...

A mother of two from Alberta, Canada, Chelsey Peat was born with a rare condition called Sturge Weber Syndrome. She was born with a large portwine stain birthmark on the left side of her face and has glaucoma in her left eye. She has had multiple surgeries including life saving brain surgery as a baby.

​Sturge-Weber syndrome (SWS) is a rare disorder affecting the skin and nervous system. Babies with SWS are born with a birthmark o...

In this episode we will discuss Sarcoidosis with Frank Rivera. Frank is the Founder and President of Sarcoidosis of Long Island,  is a WEGO Health Patient Leader, a Patient Ambassador at Illumina Inc, and a volunteer Patient Ambassador at The Foundation for Sarcoidosis Research.

​Sarcoidosis is a disease characterized by the growth of tiny collections of inflammatory cells (granulomas) in any part of your body — most commonly the ...

Every day, gifts from donors restore health to save and improve lives. As of 2019, 165 million people in the U.S. have registered as donors, but we all need to sign up. There are still 

    men, women, and children waiting for a life-saving organ transplant.  

​Organ donation takes healthy organs and tissues from one person for transplantation into another. Experts say that the organs from one donor can save or help as many as 50 ...

Do you hear a constant sound in your ears, even though there is no external source linked to the noise? If so, you’re likely suffering from tinnitus, and you aren’t alone. It’s estimated that more than 50 million Americans suffer from some degree of tinnitus, 16 million Americans experience such severe ringing that they require some type of treatment, and another 2 million suffer from such debilitating tinnitus that it impacts thei...

Our guest this week is Shannon Wyatt.  Shannon has an extremely rare condition called von Hippel-Lindau Chuvash Polycythemia (we will abbreviate to VHL).  Her only symptom that led to finding VHL was that she was diagnosed with kidney cancer at 34 years old, that didn’t even have any noticeable symptoms, it was just an incidental finding on an MRI, but when they took it out, they found it was malignant. A few years later, it was pu...

Bleeding Disorders, also known as Hemophilia, von Willebrand Disease, Coagulation Disorders, Blood Clotting Disorders, Clotting Factor Deficiencies

​Bleeding disorders are rare disorders affecting the way the body controls blood clotting. If your blood does not clot normally, you may experience problems with bleeding too much after an injury or surgery. This health topic will focus on bleeding disorders that are caused by problem...

Trisomy is an abnormality in which an organism has the wrong number of chromosomes. In humans, a normal baby will have 46 chromosomes in 23 pairs, with each parent contributing 23 chromosomes. When trisomy occurs, the individual is born with three instances of a particular chromosome instead of the usual two, resulting in 47 total chromosomes instead of 46. The results of this extra data can vary, but tend to manifest in the form o...

Lauren, is here speaking with us today about Lysosomal Storage Disease.  Lauren has four siblings whom she loves dearly, and graduated in 2011.  She worked at a community center until COVID put a hold on social gatherings. She considers herself a social person and is grateful for the chance to get her story out into the world.

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Lysosomal storage diseases are inherited metabolic diseases that are characterized by an abnormal build-...

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 ...

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 peopl...

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 D...

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 Discomfort Zone, 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...

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 g...