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Severe Methylene Tetrahydro Folate Reductase (MTHFR) With Grace from Florida
Manage episode 429423149 series 3485028
Joanna द्वारा प्रदान की गई सामग्री. एपिसोड, ग्राफिक्स और पॉडकास्ट विवरण सहित सभी पॉडकास्ट सामग्री Joanna या उनके पॉडकास्ट प्लेटफ़ॉर्म पार्टनर द्वारा सीधे अपलोड और प्रदान की जाती है। यदि आपको लगता है कि कोई आपकी अनुमति के बिना आपके कॉपीराइट किए गए कार्य का उपयोग कर रहा है, तो आप यहां बताई गई प्रक्रिया का पालन कर सकते हैं https://hi.player.fm/legal।
In this episode I talk with Grace a parent of 2 children. Her youngest daughter Carson, who just turned 4 has Severe MTHFR. MTHFR is the rarest form of Homocystinuria. With Severe MTHFR they do NOT follow a low protein diet like classical HCU. In addition to being a parent with this rare condition, Grace also is a director on the board with HCU Network America. Follow along as Grace talks about her daughter's struggles with MTHFR. If you like these episodes consider tuning into my YouTube channel Rare Chef where I have cooking videos as well as the live version of this podcast. Subscribers in both places are always welcome. Follow the link below to donate or subscribe to my podcast.
https://www.buzzsprout.com/2204433/support
In addition I am trying to turn Rare Connection into a non-profit. I need board members before I can apply for a 501c3. If you have an interest in making a difference in the life of rare disease patients you can contact me through the link in the show notes, or by e-mailing me at joanna.ball41@gmail.com. Volunteer work is a great thing to add to your resume if you have been out of work for a while.
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