Help us to help more people
  2. Ectodermal Dysplasia
  3. Advice
Being creamed 3 x daily because my skin gets sore
by Elissia grove
Dressing lightly. I work outside, so dress is extra important staying cool.
by Cedric Rigler
My daughter takes Nortryptaline every day which keeps the bad burning at bay.
by Katie (Mother to Imi who is 8)
cotton stick with natural vaseline in the nose to help having the nose humid
by Mike
Knowing you are not alone
by Heila
Knowing that I'm not the only one
by Chloe Ross
Finally getting a diagnosis!!!!
by The O'Brien Family
have 3 wonderful normal kids
by Abdul Shakoor Mian
It' s good to be different!
by Sonja (Faye's mom)
My mother was the single biggest help
by Andrew Hart
Positive attitude.
by Patrick Sattler
Getting a diagnosis after 40+ years with ED
by Cord
Увлажнитель воздуха / Humidifier
by Миша / Misha
DVTs leading to pulmonary embolies and pulmonary infarctions
by Toni
Knowing what kind of food to eat to avoid eliragic food
by Ghassan
Professional specialists
by Bo
Going to a conference on Ectodermal Dysplasia
by Helen
My parents have always been fighting my battle so I got the help I enedes.
by Maria
Hair products that help my thin hair
by Karla
Dental implants and teeth work completed
by Beth
Ectodermal Dysplasia society helped us understand the condition.
by Stuart
Partial dentures
by Vickie
Usar Vaseline nos lugares secos da pele pois para de coçar.
by Elanne
Explain your condition are best solution to answer all prejudice question
by Qayum Muhammad
Having my Mummy and nana making sure I don't overheat
by Elissia grove
Knowing that most natural soaps and fragrances, are fine but artificials give me hives, or eczema reactions.
by Cedric Rigler
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.
by Katie (Mother to Imi who is 8)
when hot, wet t-shirt
by Mike
Research
by Heila
Finally making school understand the severity!
by The O'Brien Family
my wife loves me alot
by Abdul Shakoor Mian
My friends and family love and help
by Andrew Hart
Inner growth.
by Patrick Sattler
Cooling vests from e-cooline and CoolMedics
by Cord
Увлажняющий крем "Lipikar Syndet" /Skin gel-creme nettoyant "Lipikar Syndet"
by Миша / Misha
developing narcolepsy and not able to keep my professional job due to this
by Toni
Keep cool
by Ghassan
Mucomyst 200 mg/ml
by Bo
Knowing the tricks to keeping cool in hot weather
by Helen
Kids doctor in Aalborg Who showed me that despite astma a.s.o I han do like others with the right help.
by Maria
Coconut oil for dry hands and feet
by Karla
Connecting to community of others who understand and/or have same or similar condition
by Beth
Meeting other families affected with ectodermal dysplasia
by Stuart
Colocar muito soro no nariz
by Elanne
I'm very grateful my parents treat me like a normal kid/boys.
by Qayum Muhammad
Being able to go outside when it is freezing to cool down !
by Elissia grove
Medication sensitivity. Cannot take many prescribed drugs. Adverse or little/no effect.
by Cedric Rigler
Keeping her stress level down. When her stress is high, her feet start to burn.
by Katie (Mother to Imi who is 8)
alway's keep the feet cold, helps dealing with the heat
by Mike
New technology
by Heila