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Severe Methylene Tetrahydro Folate Reductase (MTHFR) With Grace from Florida
Manage episode 429423149 series 3485028
المحتوى المقدم من Joanna. يتم تحميل جميع محتويات البودكاست بما في ذلك الحلقات والرسومات وأوصاف البودكاست وتقديمها مباشرة بواسطة Joanna أو شريك منصة البودكاست الخاص بهم. إذا كنت تعتقد أن شخصًا ما يستخدم عملك المحمي بحقوق الطبع والنشر دون إذنك، فيمكنك اتباع العملية الموضحة هنا https://ar.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.
فصول
1. Severe Methylene Tetrahydro Folate Reductase (MTHFR) With Grace from Florida (00:00:00)
2. [Ad] PodMatch (00:12:08)
3. (Cont.) Severe Methylene Tetrahydro Folate Reductase (MTHFR) With Grace from Florida (00:12:47)
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