Rare Connection

Formerly Nutrition Equity, rare connection is an extension of the podcast to include all 10,000 rare conditions and not just those covered by the Medical Nutrition Equity Act. Some of the conditions may be the same, but I am trying to turn this into a learning experience for those in the medical feild, policy leaders, and those who are just interested in hearing about rare conditions and patient stories. Rare conditions are called zebras hence the zebra striped ribbon. More common conditions are called horses. Doctors tend to learn a lot about the common conditions, but rare conditions are a paragraph in a text book at best because the medical field isn't looking at the whole picture. Rare conditions when combined are actually bigger than cancer and strokes combined and if you have a rare condition you most likely have more than one or will develop another within your lifetime. As someone with a rare condition myself (Homocystinuria or HCU), know that having a rare condition can be very lonely. Thereis normally a phsycological aspect to any rare condition, and because of lack of understanding they often go undiagnosed or misdiagnosed which can cause serious health consequences or even death. If you are interested in talking and feel comfortable on camera please contact me at joanna.ball41@gmail.com. I have a visual version of this podcast on YouTube also under my cooking channel Rare Chef.

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Rare Connection

Rare Connection Episode 6: Calciphylaxis and Multiple Endocrine Neoplasia Type 1

April 14, 2024 • Joanna • Season 2 • Episode 6

0:00 | 1:33:06

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Dubbed the man who died twice and Hod brought back to life, Kevin Hills Story appears in 45 national and international Newspapers and Magazines. Listen along as I talk with Kevin about his medical conditions Calcifylaxis and Multiple Endocrine Neoplasia Type 1(MEN1). You can see the full video on YouTube on my channel, Rare_Chef.

Chapter Markers

0:00:00 Intro
0:01:50 stroke diagnosis
0:03:42 Multple Endocrine Nepplasia 1 diagnosis
0:08:06 Calciphylaxis Diagnosis
0:13:39 Weight loss
0:15:41 Blood loss Levels
0:17:46 Near death experience
0:23:40 Kevin Meets other Caliphilaxis patients
0:27:31 Facebook Group for MEN 1
0:29:50 Maintining positivity & hope
0:38:48 Raising awareness
0:46:53 Calciphylaxis study
0:51:09 How Kevin's conditions have chenged him
0:57:22 Advice to others
1:06:15 Why you should check to see if you still need all your meds
1:08:22 Advamce,emts Kevin hopes to see in the medical field
1:15:35 Biggest lessons Kevin has learned on his journey
1:28:19 Most pressing needs of the rare disease community
1:31:06 Conclusionnnel Rare Chef also as well as many cooking videos.

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stroke diagnosis

Multiple Endocrine Neoplasia 1 diagnosis

Calciphylaxis diagnonsis

bicuspid heart diagnosis

calciphlaxis diagnosis

weight loss

gaining weight back

Near death experience 1

prayer circles around the world

learning to fundtion again

wife visits the hospital

Parathyroid removed because of MEN 1

Kevin meets others with Calciphylaxis

different types of MEN

maintaining hope

PTSD

educating medical professionals

misconceptions

have hope and laugh

study on kevin

don't let your diseases define you

how Kevin's conditions changed him

advice

advocate for yourself

Doctors need to listen to their patients

Make sure you need the medications they prescribe

advancements

lessons learned

treasure the moments in life

getting together again with children

Addressing the most pressing issues