Hang is affected by Hypohidrotic Ectodermal Dysplsia (HED). He was diagnosed by Dr Ivy Ng Swee Lian from KKH on 13th November 2001 when he was 7 months old.   

Ectodermal Dysplasia (EDs) are genetic disorders in which there are abnormalities of the ectoderm. Ectoderm is the layer of cells that covers the outside of our body. The skin, teeth, hair, parts of eyes and ears develope from the ectoderm. During embryonic development, may fail to devlope normally.

HED is hereditary. However, we were presented with two possibilities 1) Normal genes may become altered (mutate) at the time of egg and sperm formation or after fertilization. 2) Altered genes also may be inherited from a parent. Until today I do not know if I am a carrier.

The inheritance pattern of HED is X-Linked. Which means, if I (mother) am a carrier then there is a 50% chance that each of our baby boys will receive the abnormal gene from me and hence affected with HED. Baby girls will have a 50% chance of being a carrier – they will not be affected by HED but might pass the defective gene to their offsprings.

Hang’s general health and overall development, including intelligence, is within normal expectations. However, in Hang’s case, the affected ectodermal structures includes:

• Skin : Hang’s skin is thin and  dry due to poor devlopement of oil and sweat  glands. He has eczema quite often.

• Sweat Function : Hang is not able to perspire. Since our body regulates its temperature though perspiration, reduced sweating may result in elevation of body temperature that might lead to heat stroke. However, this does not mean that Hang is not allowed to run and play in the sun. He’s a bright and independant boy who is able to take care of himself – like spraying himself with water when he gets ‘overheated’!

• Hair : Hang’s scalp hair is sparse – and absent in some parts. That’s the reason why his Kong Kong (Grandpa) shaves him every week. We are all very proud of his “BOTAK” head.

• Teeth : Hang has only 2 front incisors (sharp, cone shaped) and two molars. He will need dentures in a few years time. Teeth inplants will come later. However, he is able to ‘gum’ most food – esp his favourites such as fries, bread, fishballs.

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For more information on HED, visit

National Foundation of Ectodermal Dysplasia (NFED)

 We are a member of an international

support group for families and individuals living with ED

   If you have ED and chance upon us while researching on this genetic condition, we would love to hear from you.

Please drop us an email.

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Updates : 1 September 2005

Read our stories

Featured in Today’s Parents, February 2005

No Sweat, Just Love

The Straits Times, Mind Your Body, Wednesday July 27, 2005

No Sweat

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