I am Syafiq

By Syafiq, Hypohidrotic Ectodermal Dysplasia (HED), Malaysia, January 29, 2021


I am Syafiq from Malaysia and I am living with Hypohidrotic Ectodermal Dysplasia (HED).  

I love hiking in the jungle and jogging (which previously I feared to try). This is because traveling and doing outdoor activities can be slightly difficult for me. I can’t sweat and I have a dry skin condition.  As it’s generally known, sweating moistens the skin and helps in controlling body temperature. Malaysia has a humid climate throughout the year. The average temperature is between 21 and 32 Celsius so these conditions sometimes constrain me from doing outdoor activities or traveling. I was inspired by stories from the US-based Ectodermal support group. These activities made me healthier. It has changed my mindset on how I view my body’s abilities (especially in managing body temperature).

Malaysia has many food varieties and I enjoy tasting and trying out all types of food. The second challenge which I face daily is choosing the “right” food to eat due to the absence of teeth. I enjoy eating but I need to find food that has a soft texture and requires minimum chewing. These measures also help with digestion.

I am proud to be born with HED.  I feel special and unique. This feeling only came to me after I paid more attention to my disorder after leaving home to enter university and researching about HED. I used to avoid answering people when asked about my physical differences. During my research on HED, I found H.E.D and Ectodermal Dysplasias community websites from Australia (oZED) and from the United States (NFED). These findings changed my perspective and inspired me to start a support group.

In 2018, I connected with the Malaysia Rare Disorders Society (MRDS) and was invited to join their programme called Rare Disease (RD) Youth Advocates. I was able meet other youths living with rare diseases.  The RD Youth Advocates were challenged to start initiatives to increase public awareness of rare diseases. I took the challenge and started an initiative called ‘WAUlahh’. The objective of ‘WAUlahh’ is for individuals living with rare diseases to share their experiences and to provide correct information about their disorders to the public in the Malay language using social media platforms.

My PARENTS are my biggest supporters.  Without them, I cannot imagine how I would have turned out. They made every effort and spared no expense to obtain a diagnosis for me when I was a child and to find out about the disorder. That has improved my journey in life.

After the doctor informed my parents about the HED diagnosis and explained how my future would be, my parents decided to treat me like my other siblings. No special treatment for me. They sent me to a public school, encouraged me to play with other kids, and allowed me to decide my hobbies and my ambition.

To protect me from discrimination, my parents allowed others to be around me whilst they took effort to educate them about HED. For example, that HED is not contagious and that it is only a physical difference.  They also encouraged me to make friends and to be involved in any activity that may interest me.

My family and friends bring me comfort and joy.  I appreciate them more as I grow older and value moments spent with them. I currently work in another state. I “balik kampung” or return to my hometown once a month to visit my parents and family. I look forward to these monthly visits besides enjoying some me time by going to the beach.

During the weekends when I am not at my hometown, I spend time with my friends.  We will plan an outdoor activity such as a walk in the park, jungle trekking or visiting a tourist spot.

*Find others with Ectodermal Dysplasia on RareConnect, the online platform for people affected by rare diseases

Share this

Share your photos, videos and your experiences!

Be part of Rare Disease Day by sharing your story with others and sending a message of solidarity! You can write about your story and also submit photos or a video testimonial.

Stories Of The Week

Sofia Angiuli Sofia Angiuli

Sia Strong

Stephanie Kale, Leukodystrophy and Epilepsy, United States, September 14, 2021

In 2019 our daughter was diagnosed with epilepsy. We noticed a decline in abilities and trouble with walking so we had further testing done. An MRI and whole exome sequencing revealed a variant in gen...

Infantile Neuroaxonal Dystrophy (INAD) Infantile Neuroaxonal Dystrophy (INAD)

Alice from Brazil is living with Infantile Neuroaxonal Dystrophy (INAD)

Isabela, Infantile neuroaxonal dystrophy, Brazil, August 23, 2021

My name is Isabela, I am Alice's mother who is 3 years old. We are from Brazil!Alice had her normal development until she was 18 months old. Alice sat alone, crawled and walked with support. After she...

My family My family

Xander's Journey finding a cure

Yohanna, SLC6A1, United States, March 1, 2021

My name is Yohanna. I have a 3-year-old name, Xander. He was born healthy, and everything was great until he reached six months. I noticed he was not getting his milestones, and of course, I was conce...

Mia Mia


Maja, 1p36 deletion syndrome, Croatia, February 28, 2021

My daughter Mia was born with congenital cytomegalovirus infection and from birt we new she will face a lot of obstacles in her life. We were told she will never walk, talk etc. But she was little war...

SuperBouli SuperBouli

Story of SuperBouli

BOULI, Sandhoff disease, infantile form, Lebanon, February 27, 2021

SuperBouli for rare disease day 2021Read my story or watch the video to know why I am superRarehttps://youtu.be/Rw4hV_sk6VQHello!!! I am Bouli, and this year, on the 28th of February, the rare disease...

Photography credit: Oumayma B. Tanfous Photography credit: Oumayma B. Tanfous

Keep on Smiling

Maria, Beta-thalassemia, United States, February 25, 2021

Keep On Smiling“Keep on smiling” the young doctor said to me at an impressionable age of ten. Those words, at that time, influenced the rest of my life. I was born with a rare disease, Beta Thalassemi...

On my Instagram-account (@bibi_wheelchair_traveller) I raise awareness for the disease ALS, I share my thoughts on disease and disability and present our way of wheelchair-traveling. On my Instagram-account (@bibi_wheelchair_traveller) I raise awareness for the disease ALS, I share my thoughts on disease and disability and present our way of wheelchair-traveling.

"Juvenile ALS" occurs in less than 1 out of 1 million people

Bibi, Amyotrophic lateral sclerosis, Austria, February 24, 2021

Hi, I’m Bibi, 32 years old, from Austria (Europe) and was diagnosed with ALS (Amyotrophic Lateral Sclerosis) at the age of 18.My first symptoms started to show in 2005 when I was 16 years old. I notic...

Hagamos visible las enfermedades raras... Hagamos visible las enfermedades raras...

Nahiara... el amor en persona

Claudia, Williams syndrome, Argentina, February 24, 2021

Mi nombre es Claudia, mamá de Nahiara,  ella fue diagnosticada a los 7 meses de edad con Síndrome de Williams, una detección en el cromosoma 7q11.23. Dentro de las características principales de éste ...

Palden and Mom Palden and Mom

The Glimpse into Palden's Journey as the First SMA Patient of Bhutan

Ugyen, Spinal muscular atrophy with respiratory distress type 2, Bhutan, February 22, 2021

Palden is a 12 year old girl from Bhutan. She was diagnosed with Spinal Muscular Atrophy (SMA), Type II, at the age of 9 months, as the first case and one of the only two diagnosed in the country. SMA...

Laurenne in Wellington Laurenne in Wellington

You have what now?!

Laurenne, Panhypopituitarism, Hypogonadotropic hypogonadism, New Zealand, February 10, 2021

Hello to everyone reading this, my name is Laurenne, and I was born with congenital Panhypopituitarism (CPHP), and Hypogonadotropic hypogonadism (HH)It briefly means that all the hormones that a funct...

Yasmin ElSamra & mama hanaa elsadat Yasmin ElSamra & mama hanaa elsadat

Yasmin ElSamra left a legacy

Yasmin ElSamra, Epidermolysis bullosa dystrophica, Egypt, February 6, 2021

Epidermolysis  Bullosa (EB) is a genetic condition that causes the skin to be fragile, blistering easily. Blisters and skin erosions form in response to minor injuries or frictions. Mutations in the C...


Share your story

(To find the english name and more information about your disease, click here). Start typing the English name of your disease. Please choose from the suggestions that appear. If your disease is undiagnosed please write ‘undiagnosed’, or if you would like to list multiple diseases, please type in a list separated by commas.