Being creamed 3 x daily because my skin gets sore
Dressing lightly. I work outside, so dress is extra important staying cool.
My daughter takes Nortryptaline every day which keeps the bad burning at bay.
cotton stick with natural vaseline in the nose to help having the nose humid
Knowing you are not alone
Knowing that I'm not the only one
Finally getting a diagnosis!!!!
have 3 wonderful normal kids
It' s good to be different!
My mother was the single biggest help
Positive attitude.
Getting a diagnosis after 40+ years with ED
Увлажнитель воздуха / Humidifier
DVTs leading to pulmonary embolies and pulmonary infarctions
Knowing what kind of food to eat to avoid eliragic food
Professional specialists
Going to a conference on Ectodermal Dysplasia
My parents have always been fighting my battle so I got the help I enedes.
Hair products that help my thin hair
Dental implants and teeth work completed
Ectodermal Dysplasia society helped us understand the condition.
Partial dentures
Usar Vaseline nos lugares secos da pele pois para de coçar.
Explain your condition are best solution to answer all prejudice question
Having my Mummy and nana making sure I don't overheat
Knowing that most natural soaps and fragrances, are fine but artificials give me hives, or eczema reactions.
Things that soothe her nerves. We've removed all the rugs in the house. Swimming. We're getting her a hot tub. Sometimes she uses the hair dryer to put warm air on her feet.
when hot, wet t-shirt
Finally making school understand the severity!
my wife loves me alot
My friends and family love and help
Inner growth.
Cooling vests from e-cooline and CoolMedics
Увлажняющий крем "Lipikar Syndet" /Skin gel-creme nettoyant "Lipikar Syndet"
developing narcolepsy and not able to keep my professional job due to this
Keep cool
Mucomyst 200 mg/ml
Knowing the tricks to keeping cool in hot weather
Kids doctor in Aalborg Who showed me that despite astma a.s.o I han do like others with the right help.
Coconut oil for dry hands and feet
Connecting to community of others who understand and/or have same or similar condition
Meeting other families affected with ectodermal dysplasia
Colocar muito soro no nariz
I'm very grateful my parents treat me like a normal kid/boys.
Being able to go outside when it is freezing to cool down !
Medication sensitivity. Cannot take many prescribed drugs. Adverse or little/no effect.
Keeping her stress level down. When her stress is high, her feet start to burn.
alway's keep the feet cold, helps dealing with the heat
New technology