Join 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 Markers
00:00 intro
02:15 diagnosis journey
03:28 How Rebecca found out she was a carrier
05:10 Hypohydrotic Ectodermal Dysplasia explained
06:29 Initial thoughts
07:46 Resources & support networks
09:03 Tools to prevent overheating
11:10 Dental care
13:12 Soft food diet
13:50 feeding tubes
14:43 Ear, Nose & throat &respiratory issues
16:47 Support from the medical community
17:56 support system
18:59 Advice to new HED Patients
19:37 Misconceptions
20:58 Advocating for Masson
22:26 Hopes for the future
23:37 How being a parent of a child witha rare disease has changed Rebecca
25:28 Most rewarding part
26:20 Advice to younger Rebecca
27:05 conclusion
