Last week Jentry's step-mom took her to the salon for her first "official" hair cut. Their good friend, Lisa, got the privilege of the making the first few snips. She thought trimming up the ends a bit may help stimulate some new growth. Erica sent me these pictures and said, "There wasn't anything to save...it just kind of flew away." I completely understood as Jentry's hair is so fine. The photos made me smile, because I could see how special she felt.
Jentry's unique hair is the result of Ectodermal Dysplasia. Ectodermal Dysplasias are inherited disorders that involve defects in the hair, nails, sweat glands and teeth. When a person has a least two types of abnormal ectodermal features the individual is identified as being affected by ectodermal dysplasia. There are more than 150 different types of ED. Symptoms range from mild to severe. Only in rare cases does ectodermal dysplasia affect lifespan and very few types involve learning difficulties.
Fortunately for Jentry, her hair and nails are the only parts affected. Individuals affected by an ED syndrome frequently have abnormalities of the hair follicles. Scalp and body hair may be thin, sparse and very light in color, even though beard growth in affected males may be normal. The hair may grow very slowly or sporadically and it may be excessively fragile, curly, or even twisted. Fingernails and toenails may be thick, abnormally shaped, discolored, ridged, slow-growing, or brittle. The cuticles may be prone to infections.
All ectodermal dysplasias are heritable or genetic disorders, which means that they can be inherited or passed on to children. Jentry inherited the disorder from her father's side of the family. Her dad, grandmother, and several other relatives are also affected by ED. No one is really certain how many people are affected by ED worldwide. The latest estimate is that as many as seven of every 10,000 babies are born affected by an ectodermal dysplasia. Currently there is no cure.
This disorder is completely cosmetic for Jentry. Her appearance may be different from the "norm", but she is a completely healthy little girl. Majority of the time I forget she even looks different. To me it would seem strange for her to have long, flowing hair. When it comes to her self perception, I don't think she realizes that she looks different from her peers. This will most likely only last for a few more years, but I am hopeful that her strong personality will see her through the tears that I am sure will be shed from time to time.
Every once and awhile she asks me when her hair will be long and I always respond, "I don't know honey. It may always be short because that is the way God wanted your hair to be."
Jentry loves to play with her dolls' hair and even begs to brush mine. Of course I let her every chance I get. She is so proud of herself when she can get my hair up into a ponytail, which is not easy task as my hair is super thick. If only I could give Jentry just half of my hair.
I am not sure if it is due to her naturally short hair or if she would have been fascinated with hair anyway, but she is definitely into wearing things on her head.
I call them Jentry's Hair Creations. She really is quite imaginative!
No matter what her hair decides to do, my hope is that Jentry has no doubt that she is loved no matter what. I am certain there will come a day when she is crying to me about something someone said or when she is mad at God for making her different. I pray that I can give her words of wisdom and someday she will be able to accept her irregularity with great confidence.
