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Hypohidrotic Ectodermal Dysplasia With Rebekah From Oregon

EPISODE · Aug 15, 2024 · 29 MIN

Hypohidrotic Ectodermal Dysplasia With Rebekah From Oregon

from Rare Connection

Send us Fan MailJoin me as I talk with Rebekah about her child Mason's diagnosis with HypoHidrotic Ectodermal Dysplasia.  Mason is now  years old and he is already advocating for his health with his mother's help.  HypoHidrotic Ectodermal Dysplasia is a rare genetic condition characterized by the bodies inability to sweat, sparse hare, tooth loss and ear, nose and throat issues.  Mason is missing all except 2 of his natural teeth and so he has to wear dentures to be able to eat and carry on a conversation.  This condition involves a lot of therapy with both speech therapy and therapists that specialize in feeding.  Chapter Markers00:00 intro02:15 diagnosis journey03:28 How Rebecca found out she was a carrier05:10 Hypohydrotic Ectodermal Dysplasia explained06:29 Initial thoughts07:46 Resources & support networks09:03 Tools to prevent overheating11:10 Dental care13:12 Soft food diet13:50 feeding tubes14:43 Ear, Nose & throat &respiratory issues16:47 Support from the medical community17:56 support system18:59 Advice to new HED Patients19:37 Misconceptions20:58 Advocating for Masson22:26 Hopes for the future23:37 How being a parent of a child witha rare disease has changed Rebecca25:28 Most rewarding part26:20 Advice to younger Rebecca27:05 conclusionSupport the show

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Hypohidrotic Ectodermal Dysplasia With Rebekah From Oregon

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