EDS Ehlers Danlos Syndrome
Release Date: 06/08/2021
Shingles is a painful rash that develops on one side of the face or body. The rash consists of blisters that typically scab over in 7 to 10 days and fully clears up within 2 to 4 weeks. Before the rash appears, people often have pain, itching, or tingling in the area where it will develop. This may happen several days before the rash appears. Most commonly, the rash occurs in a single stripe around either the left or the right side of the body. In other cases, the rash occurs on one side of the face. Shingles on the face can affect the eye and cause vision loss. In rare cases (usually...info_outline Juvenile Arthritis & hEDS
Squeeze a world of passion, goal driven problem solver and an adventurous triathlete into 5 feet of fun and you get Faith Louise Cooper. Faith Louise grew up in a family of 5 with 2 younger sisters. At the 12 she was diagnosed with Juvenile Rheumatoid Arthritis, now known as Juvenile Idiopathic Arthritis. In 2017 she was diagnosed with hypermobility syndrome and was recently changed to Hypermobility Ehlers Danlos Syndrome abbreviated as hEDS. Her younger sister also battles with hEDS on a daily basis. Faith Louise joined the swim team in middle school to help manage...info_outline Ehlers Danlos & Oral Health
The Ehlers-Danlos Syndromes (EDS) give rise to a spectrum of features affecting the mouth that may lessen quality of life. Additionally, routine dental care has the potential to be compromised as a consequence of some of the systemic features of the disease. This episode provides a review of the oral and dental aspects of EDS. Orofacial manifestations The oral and facial features of EDS vary with each type of disease. There have been few detailed studies of the orofacial manifestations of the rare and/or recently described types of EDS. In general the greater the laxity of the skin and mucosa...info_outline Congenital Cytomegalovirus
Congenital cytomegalovirus (congenital CMV) is a group of symptoms that may occur when an infant is infected with the before birth. Most infants who are infected with the virus never develop symptoms of the condition. However, approximately 10% of babies will experience health problems and/or disabilities such as problems with the lungs, liver and/or spleen at birth; hearing loss; vision loss; intellectual disability; seizures; small head size; and/or lack of coordination. Some babies with the condition may have evidence of infection at birth, while others may not develop symptoms...info_outline Men's Heart Health
On average men die almost 5 years earlier than women! Why? Stress and cardiac health have a direct connection, how does this affect men? The mind and mental health status for men has a direct correlation to their heart health! Want to know more? Listen to this week's episode!!info_outline Fibrous Dysplasia
This week's episode discusses a rare condition that turns bone into fibrous tissue. Fibrous Dysplasia can be devastating, but our guest, Brittany is taking it all in stride and is continuing her advocacy work with us by sharing her story. Without further ado...here's Brittany! I am a 36 year old woman from Indiana. I have a rare disease called Fibrous Dysplasia. It turns my bones into fibrous tissue. There is no cure and surgery is our only form of treatment. I have had 12 surgeries so far. At 13, I had to get a tooth pulled and after a few months an uncle of mine noticed...info_outline EDS Ehlers Danlos Syndrome
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! 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...info_outline Food Allergies
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 adults. While there's no cure, some children outgrow their food allergy as they get older. It's easy to confuse a food allergy with a much more common reaction known as...info_outline Stroke Awareness
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 include: Weakness in the face, arm, or leg Difficulty speaking Vision loss Dizziness Brief loss of consciousnessinfo_outline hypothalamic obesity
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 survivors’ quality of life. [One particular condition, hypothalamic obesity, was especially daunting and she was compelled to figure out a treatment for this...info_outline
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!
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 🌍
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 🚧
🆗More about the RARE. Girl behind the brand;
🥄I 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.
🥄My favorite book is a Thesaurus
🥄I am a loyal Ticondaroga Pencil user
🥄I love to create & I am a huge nerd
🥄My Wardrobe can easily be mistaken for your grandmas & I love it
Change Starts Here. Connect With RARE.™
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