Twenty years ago my journey with Alopecia Areata started. My son, then 20 months old, had a chicken pox that rested at the hairline on his forehead. Within days his hair had fallen out and was starting to receded down the center of his scalp.
With no knowledge of the cause and no visible sign of hair regrowth, off we went to the dermatologist.
On inspecting my son, the conclusion was Alopecia Areata. After the general questions probing what that meant, came the question from me “so how do we treat this”.
I’ll never forget the following words. “There are 5 treatments that you can opt to undertake”. My immediate emotion was relief, but then he continued: “ So your options are;
- Ultra violet light treatment – here a series of sessions are used to target the skin cells, the risks are severe burning for young skin, increased risk to develop skin cancer:.
- Cortisone injections into his scalp. He would need a series of 5 treatments initially of 50 injections and based on his age would need to go under a general anaesthesia each time and there is a risk that it will interfere with his normal development.
- Next we can apply a chemical DPCP directly to his scalp, here the scalp becomes allergic to itself and once the blisters heel and peel, is when we will see if there are results. The risk here is that it is very uncomfortable, prone to infection.
- Steroid treatments can promote hair growth, but could also make him sterile taking them from such an earlier age.
The final options is to put a hat on his head and get on with life. So which option do you want to go with?”
My feeling of relief immediately disappeared after I heard the words “severe burning” and had turned to total disbelief. I was shocked that he would convey this information so bluntly, but also astounded that these were the options presented.
Still with a ray of optimism I asked “so what treatment has the best outcome?”. He responded “Well, which treatment are you leaning towards?”. I said, none, they are all horrific. Quite smugly he replied, “That is a common answer from parents, and that is why we don’t have any meaningful statistics on treatment for children and youths”.
I spent the next four hours researching for support groups, specialists with addressing handling of emotional situations.
My next appointment was with a Psychiatrist, and the outcome of this appointment gave me confidence and strength that I could manage my sons journey with Alopecia Areata. And from about the age of 14 he did treatment number 5 and engaged in wearing a hat.
What was your first experience with treatments for alopecia like? What would you have done if you had been in my shoes?
Chel Campbell – AAAF President
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My first treatment discussion was also for my young son, at about 14 months old, in 2014. The dermatologist told me there were a variety of treatments, none of which really had clinical validity and were more often than not unsuccessful. He suggested a short burst of steroids to see if that would kick start an immune reaction but ceased after one week when there was no response. He said my son could return to him when he was 15 to discuss possible treatments if he was interested then. Disheartening to hear there was pretty much nothing you could do, but at least not scary!
The treatment options are definitely disheartening, but I’m glad to hear it wasn’t a frightening experience for you and your son. It sounds like your dermatologist was very upfront about the whole thing.
Having the option open for young people with alopecia to return when they’re old enough to discuss the treatments themselves actually sounds like an interesting policy. I know when I was young, my parents always tried to keep me included in the decisions (where possible due to age, of course) and that felt really good that I got some control over this out of control condition.
In the meanwhile, AAAF will definitely keep working towards research into this condition, and hopefully by the time your son gets to 15 we’ll have better options available.
I eventually had the same response from my dermatologist with the 5 options, but option 5 was wear a wig as I am female, however when I first had it i was 18 (nearly 30 years ago) and first option was the familt doctor. He had no clue. I was on a series of expensive ointments, which I found out was just purified water, and many blood tests and skin samples taken. I eventually got a referal to the dermatologist. He had better bedside manner than previous story. As i had tough skin and loved heat I undertook PUVA treatment for 1 year. I later found that this aided in lowering my immune defenses as the tablets you take before the human-sized microwave were to make your body more accepting of the UVA rays influcted. All I got was an all over tan. In Melbourn this was not good and people as a whole are cruel. Complete strangers mocked me on having a great solarium tan and always told me to grow some hair. Personally I toughened up. Took a long time to accept myself as i was and let bad comments slide. Took a long time for me to accept group help also as my first experience in early 90’s from a support group was “shave your head and get over it.” Not helpful. Much better now as the problem is more known and online shopping allows to search for wig options. I work with public everyday and prefer to blend in – not stand out – so a wig is a good option for me. At least I can paint my eyebrows on and line my eyes so I have definition and look the best that I can.
How rude of people to insult you for having a tan! Honestly, every time I think I’m finished being surprised at the way the people act around those with alopecia, I hear a new story that just baffles me.
I’m sorry to hear your first experience with a support group wasn’t as positive as it should have been, but it’s great that online connection has helped you find products that work for you. Public awareness is definitely growing and hopefully future generations will have better acceptance and better treatment options.
Thanks for sharing your story!