A Poem
I am gifted with ectodermal dysplasia
I wonder what made me this way
I hear whispers of the people I pass by on the street
I see an angel giving me strength
I want to live one day of a normal person’s life
I am gifted with ectodermal dysplasia
I pretend to be a model like Melanie Gaydos, a model and actress with ectodermal dysplasia
I feel the presence, motivation from my family
I touch the lives of the people I meet with my spirit
I worry I am not good enough for people to accept me
I cry when I have the anxiety of making a mistake, or because I made a mistake
I am gifted with ectodermal dysplasia
I understand when I do something wrong
I say what I think and I think the truth
I dream about darkness and fear
I try to keep quiet when I feel I don’t have a say in something, but I can’t. I say my opinion and thoughts. Harsh or nice I speak the truth
I hope I can be accepted for my blunt personality and my stubborn attitude
I am gifted with ectodermal dysplasia
This poem was written by a teenager who’s affected by ectodermal dysplasia and wishes to remain anonymous.
My son has hypohydrotic ectodermal dysplasia and feels this same way. He is now 20 and he sports the best mutton chops and flat brimmed hat. He fits in as an adult much more than when he was a child. Stay strong young one. Life is a challenge worth taking.
That speaks volumes and for all with ED. Thank you for sharing and always look up. God made each of you and has a gift in you all. ❤️
Wow, amazing poem. My sister has ectodermal dysplasia, and I felt like I was reading about her.
My daughter, Mikaella, has an ectodermal dysplasia and at the same time with juvenile polyposis syndrome. But my child sees ectodermal dysplasia as a gift because it gives her the drive to dream big. I really admire her positivity, she is so patient in explaining her condition to the people around her like having a slow growing kinky dry hair; shark shape teeth ; unusual nails and excessive sweating. She never said any negative words toward people who are bullying her but would always say, I have a big GOD, He gave me a good life.
As a mom, I secretly cried but I realized, my child has a very strong personality and never cried over bullying, so I am just here for her, supporting her in all her activities as she excels in school academics and even in co- curricular activities. I can say, I am blessed having a daughter with ectodermal dysplasia, who has a positive outlook in life!
You are amazing! Your poem was wonderful and I think you have a gift for writing! My daughter has ED. She is now 37 and has 2 beautiful daughters of her own.
Hello Kim Jeffery,
I am Uzair from Pakistan, facing the same ED issue, Can i discussed something personal if you like to speak me out??
My email is:
sfarooqiz84@hotmail.com
Will wait for your replying email.
Your strength and beauty shines in every poetic word you write
Beautiful words from a beautiful person. I share and understand your feelings. I am a 48 year old woman with ectodermal dysplasia and my adolescence was hard and painful for me but let me tell you that, with the years, you will understand that people will love you for who you are, not how you look and as long as you love yourself, everybody will do. So stay strong, and always, always walk with your head up high. My mom used to say that to me and I found it really powerful and encouraging.
Hello G all,
Dear ones,
Its been really a demotivating factor for me that being ED affected person, I always been deprived by the community i am living in and the people surrounding me, I completed my education with great difficulty and doing a private job just to survive and to live a peaceful life.
I always tried to speak about myself but in vain efforts. I thanked God to have this platform of speak my inner voice of my soul, I although with other facing the same position in my physically and mentally distraction world which gave me great challenges for upward growth, achieving my life goals as of my society and governmental / state officials neglected people like in being a big hurdle for me, to some extant i achieved it and rest are to gain them.
For that i need help in all sort moral, financial and educational plus experienced.
Please if some one there can, the doors are generously opened for them. Will wait for the welcome speech.
Thanks for sharing your thoughts and emotions in this poem. It is well written and speaks volumes. Gifted? Yes! Be you and shine from the inside out as you are a blessing to this world.
Inspirational and gave me strength when some of my ED symptoms (I have EEC sundrome) were overwhelming. I truly believe that we’ve been given this gift for a purpose, to bend the words of Marianne Williamson, ‘we’re not inadequate, we’re powerful beyond measure.’
I’m a 65 year old British woman who was diagnosed at the age of 60, the oldest person in the UK known to have the syndrome at that time. Previously I had no label. I just had missing fingers, funny teeth, runny sore eyes and kidney issues. But I was Estelle. After the diagnosis I was someone with EEC. We must all remember that we’re people first and foremost, not curious medical specimens.