On this week's show we are speaking with Kristine Hoestermann, the founder of "" and she will be explaining how she was diagnosed with HEDS and where that diagnosis took her!  Heeeeere's Kristine! &nbsp; 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 wake up sick and never get better. That I would lose everything I knew without noticing. In the beginning of getting sick I experienced extreme isolation. I felt like I didn’t fit in anywhere. Among symptoms that have yet to have to be attributed to a known disease🧬I have been diagnosed with EDS , POTS, and Autoimmune Small Fiber Neuropathy Secondary to Unknown Connective Tissue Disease 🆗 That feels like a lot right? but I didn’t look sick and that made it really hard for not only me to accept but also the world around me 🌍 &nbsp; I created RARE.™ as a safe space for myself until I realized so many other rare disease fighters, chronic illness, chronic pain, invisible disease or any human needed that same thing. So I got to work and here we are. Together we can start to bridge the gap 🚧 &nbsp; 🆗More about the RARE. Girl behind the brand;&nbsp; 🥄I &nbsp;am a fierce lover of Grey’s Anatomy. Meredith Grey is my person. 🥄You can be sure that I’ll be either listening to Taylor Swift or True Crime.&nbsp; 🥄My favorite book is a Thesaurus 🥄I am a loyal Ticondaroga Pencil user 🥄I love to create &amp; I am a huge nerd &nbsp;🥄My Wardrobe can easily be mistaken for your grandmas &amp; I love it &nbsp; Change Starts Here. Connect With RARE.™ &nbsp; 📱Share With Us 🔛@findyour rare on all social platforms #findyourrare 🛍 Shop your purpose 🔛&nbsp; 🎙 Because We Are Strong Podcast 🔛&nbsp; 🗳 VPR Membership Club 🔛&nbsp;&nbsp; ✉️ Reach Out 🔛&nbsp;  &nbsp;

EDS Ehlers Danlos Syndrome

In this episode we will discuss Hypertrophic Olivary Degeneration (H.O.D.) once again, this time with a new guest, Brad Asher. Hypertrophic olivary degeneration (HOD) a rare neurological condition caused by degeneration in the brain stem, the structure that connects the brain to the spinal cord.&nbsp; Signs and symptoms include palatal tremors, lack of movement coordination (ataxia), Holmes tremor, vision problems, muscle weakness, and gait impairment, along with an MRI showing enlargement (hypertrophy) of the&nbsp;.&nbsp; ​ Brad managed Health Clubs for 20 years and sold commercial and personal lines of Insurance for 20 years as well.&nbsp;  He retired because of HOD at age 59.&nbsp;

Hypertrophic Olivery Degeneration

Remember when the city lights go down
Remember when you’re hiding underground
Remember when the signal of democracy is gone
That the world that gave us evil gave us Warne

Remember the uncounted refugee
Remember through the lost humanity
Remember when the bough breaks and a hungry baby’s born
That this world of swords and suffering made Warne
Yes, a world of swords and suffering made Warne

Remember in the night time of the knives
Remember when they steer us into tribes
Remember when the demons in the wicket all come home
That the world that gave us wickedness made Warne
Yes, the world that gave us wickedness made Warne

Remember when they’re jumping on your dreams, oh
Remember when they undermine your schemes, oh
Remember when they claim you’ll never find your unicorn
That the world that shook our faith gave birth to Warne

Remember when they’re jumping on your dreams, oh
Remember when they undermine your schemes, oh
Remember when they say you’ll never find your unicorn
That the world that shook our faith has good in store
And in the winter we’ll do better to remember something warm
And the world that shook our faith has hat-trick maidens and
The world that shook our faith gave us Shane-
Yes, the world that shook our faith gave us Shane Warne

Unicorn

Unicorn (Shane Warne)

This week we will discuss olfactory disorders, or problems with smelling either good or bad chemicals, foods, fragrances, and the like.&nbsp; Did you know your sense of smell also affects your taste? A damaged sense of olfaction is severely disrupting: the joy of eating and drinking may be lost, and depression may result. There could also be dangers associated with the loss of smell, including the inability to detect leaking gas or spoiled food. &nbsp;More than 2.7 million people in the United States have an olfactory disorder, and this is likely an underestimate. Some people have suggested that about half of people over the age of 60 have a decreased sense of smell. &nbsp;

Olfactory Disorders

This week we will discuss the dangers of eating restaurant ice or any ice for that matter! &nbsp;Ice handling is part of food safety training.&nbsp; Without proper ice machine cleaning, your restaurant’s ice maker is at risk from mold, slime, scale, and sediment. ​Slime and mold form because ice machines provide a damp and dark environment where they can thrive. Yeast and dust in the air provide these growths with an unlimited supply of food to continue to flourish. Ice machines are also susceptible to other biological contaminants that are dangerous to customers, like E. Coli, Hepatitis A, and Norwalk Virus. In fact, a 2011 study from the Environmental Protection Agency focused on Las Vegas restaurants found that 72.2 percent of ice was “positive for presumptive coliform bacteria presence.” Restaurants can clean mold, slime, and other biological contaminants from their ice machine with a few simple steps. A weekly cleaning schedule helps tremendously to keep these containments at bay, but it is not a replacement for a professional ice machine cleaning from a qualified technician.   Another way eating ice can be harmful is when a person develops Pica, or an unusual craving for chewing on ice.&nbsp; This can mean you have iron deficiency anemia.&nbsp; Compulsive ice chewing can lead to a variety of complications. It may also interfere with your life at school, work, or home. Make an appointment with your healthcare provider to find out the reason why you’re craving ice. A simple blood test may help you figure out the cause of your cravings and start treatment.

The Dangers of Iced Foods

This week we will discuss Strep once again.&nbsp; &nbsp;  Bacteria called group B Streptococcus (group B strep, GBS) commonly live in people’s gastrointestinal and genital tracts. The gastrointestinal tract is the part of the body that digests food and includes the stomach and intestines. The genital tract is the part of the body involved in reproduction and includes the vagina in women. Most of the time the bacteria are not harmful and do not make people feel sick or have any symptoms. Sometimes the bacteria invade the body and cause certain infections, which are known as GBS disease. ​ GBS bacteria can cause many types of infections:   Bacteremia (bloodstream infection) and&nbsp;&nbsp;(the body’s extreme response to an infection)   Bone and joint infections   &nbsp;(infection of the tissue covering the brain and spinal cord)   &nbsp;(lung infection)   Skin and soft-tissue infections   GBS most commonly causes bacteremia, sepsis, pneumonia, and meningitis in newborns. It is very uncommon for GBS to cause meningitis in adults.&nbsp;

Strep, It's Worth Repeating

This week we will discuss Witkop Syndrome with Cheryl Kingsford. Cheryl is 44.5 years old, from Boise, Idaho, advocate, survivor of trauma, living with ectodermal dysplasia. Single, no kids of her own, but has cute chihuahua.&nbsp; She rescued Gina August 5, 2020 after fostering her since May 28, 2020. Gina and Cheryl go on a lot of hiking adventures. Cheryl has a Bachelor of Science in Psychology (Magna Cum Laude) from Boise State University 2010. First in her family.&nbsp; Does a lot of volunteer work over the years. Cheryl is the National Foundation for Ectodermal Dysplasia Family Driven Lead Advocate for Idaho. She is joining us today to talk about Ectodermal Dysplasia, Witkop’s Syndrome, and for the   Witkop is a rare syndrome that can affect the nails teeth and hair. Witkop syndrome is a rare autosomal dominant ectodermal dysplasia involving the teeth and nails. Although a few reported cases have sparse or fine hair, almost all affected individuals have normal hair, sweat glands, and ability to tolerate heat. Affected individuals have a variable number and variable types of congenitally missing permanent and/or primary teeth, which frequently results in lip eversion due to loss of occlusion in the vertical dimension. Nails are generally thin, slow-growing, brittle, and spoon-shaped (koilonychia). Toenails are usually more severely affected than fingernails. The nail defects are alleviated with age and may not be easily detectable during adulthood  ​ This month is Ectodermal Awareness month.&nbsp; Ectodermal dysplasias are rare genetic disorders that affect about 3 out of 10,000 babies. They cause the parts of the body like hair, teeth, nails, sweat glands and skin to develop and function abnormally. With more than 100+ different&nbsp;, it’s challenging for families to find answers and for healthcare professionals to offer treatments or cures.&nbsp; Witkop Syndrome is one of these disorders and we are honored to be sharing Cheryl's story today. &nbsp;

Witkop Syndrome

This week we are talking once again with Kristal Kent.&nbsp; If you recall, Kristal has joined us on previous interviews discussing Fibromyalgia and again discussing prepping for surgery as a chronically ill person.&nbsp; We never really gave Kristal the credit she deserves for being such a fantastic advocate for all Veterans and those with Fibro or other life-long medical conditions.&nbsp; Allow me to properly introduce this dynamic woman! ​Kristal Kent is a disabled Army Veteran living with Fibromyalgia and served with the 256th Combat Support Hospital (256th CSH). Kristal worked with the Personnel (HR) department, then after September 11th, 2001, Kristal was re-assigned to the Tactical Operations Center (TOC) of the 256th CSH. After being medically discharged due to injuries, Kristal stayed on with her unit, the 256th CSH, and volunteered for 2 ½ years as the Family Readiness Group Leader, re-invigorating the program to become a supportive extension of the unit for the soldiers and their families. During her time as the FRG Leader, Kristal upstarted a Food Pantry to assist the Unit’s service members struggling with food sustenance, coordinated a resource list of federal, state, and local support and assistance resource programs for soldiers and families, along with hosted “Readiness” educational weekend to ensure soldiers and Military Families were prepared for deployment. Kristal’s Volunteerism as FRG Leader was officially recognized with a Commendation from the U.S. Department of the Army. Kristal also worked in Social Services for over 20 years in a variety of roles, from Adult Advocacy Coordinator, Care Coordinator, Assertive Community Treatment Specialist, Benefits Coordinator and Supported Employment Services, assisting individuals with Intellectual Disabilities, Mental Health Conditions and Veterans alike. ​&nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; As a Veteran living with Fibromyalgia, Kristal identified the lack of supports, healthcare options and education for those living with Fibromyalgia, especially Veterans. To address the gap in healthcare and community supports, Kristal founded the initiatives, “The Fibromyalgia Pain Chronicles” and “Veteran Voices For Fibromyalgia,” to address the inequities in healthcare, Kristal engages in VA Policy Advocacy, Legislative Advocacy and Systems Advocacy to emote positive change for those living with Fibromyalgia. Kristal also provides support, educational resources, and advocates on behalf of those living with various Chronic Pain Conditions, Rare Diseases, PTSD and Traumatic Brain Injury (TBI). Kristal’s Advocacy work on behalf of the Veteran and Fibromyalgia Communities has been recognized by several organizations such as WEGO Health in which she received the Patient Leader Hero Award and the Best In Show on Facebook in 2018, the 2019 Fibro Warrior Award from the Fibromyalgia Care Society of America, the Warrior of the Week in 2020 from UK Fibromyalgia. In May 2021 Kristal was presented with a Commendation from the State of Ohio House of Representatives for her advocacy work through Veteran Voices For Fibromyalgia. In August 2022, Kristal was chosen by Health Union, through the Social Health Awards patient advocacy platform, as the recipient of the 2022 Lifetime Achievement Award. In addition, in May 2022 Kristal advocated for and obtained a Proclamation designating May 12th as Fibromyalgia Awareness Day from the State of Ohio Governor. ​Kristal previously served 3 years as a Board of Trustee for the Fibromyalgia Care Society of America along with previously served as a Board Member on the Wego Health Patient Advisory Board. Kristal is currently a member of Society For Participatory Medicine, Social Health’s Patient Leader Network, a Co-Op member of Savvy Cooperative and a member of the American Legion. Kristal's latest medical challenge has been heart related.&nbsp; Since February is heart health month and Valentines Day happens to be...

Women and Cardiac Events

Episode 6 features Mary W. &nbsp; A prolific dancer for most of her adult life, she stayed in remarkable condition. Mary is an octogenarian from Chicago, Illinois.&nbsp; She is a retiree with many nieces and nephews.&nbsp; Her hobbies include crocheting and baking.&nbsp; She also loves cards, scrabble and crossword puzzles. &nbsp;

Sciatica & Arthritis PodcastDX

5. Szilágyi Domokos Nádiverebek

A weekly, peer to peer, healthcare insight podcast.

EDS Ehlers Danlos Syndrome

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