My name is Alfie. I am 9 years old and live in East Yorkshire. I have alopecia areata.
I have had alopecia areata from being born.
(Mummy and Daddy will help me to tell my story).
Alfie: I didn’t have any hair or eyebrows until I was four years old. I don’t really remember but I have seen pictures. Seeing the pictures made me feel different to other children and this made me feel sad.
Andy (Dad): The GPs were good at the initial stages of trying to find out what was the cause of the hair loss, such as blood tests and investigating iron levels etc but they never mentioned alopecia. It was suggested to cut it very short to try and thicken up the ‘fluffy’ hair that he had. We did this but to no effect. Various creams and lotions were also prescribed but nothing seemed to work. Alfie was thriving in every other way but we were concerned that this was something more sinister. It wasn’t until we were referred to Sheffield Children’s Hospital that we received the alopecia areata diagnosis which we came away with that day. It was a big relief to finally understand what the issue was and how we could move forward.
Alfie’s dermatologist prescribed a steroid lotion which is applied to Alfie’s scalp daily. He experienced some growth on his scalp and after approximately 6 months he had a full head of hair but sadly his eyebrows have never grown.
Since Alfie's hair began to grow he still has 'sensitive patches' on the back and sides of the head where coverage becomes less. We have always tried to give Alfie haircuts which suit and compliment his hair line.
When I was small and at pre school I had to wear a sun hat but, as we were only young, some of the other children didn’t realise why and sometimes took my hat off me at playtime and I didn’t like that. I think its unfair that I still don’t have any eyebrows.
Alfie: The thing that has helped me most is talking to my Mummy and Daddy. They have helped me by explaining about Alopecia and what it is and what I should say to other children if they ask why I don’t have much hair or any eyebrows. We have practiced scenarios where children or people might ask me about my hair and other scenarios such as when the children used to take my hat off me. They have given me some good things to say back. They’ve told me to tell the children that its “ok to ask” and that its not infectious, it doesn’t hurt, it’s just something I was born with, “so now can we just go and play”.
Sally (Mum): We told Alfie that its ok for children to ask about his alopecia, and its ok to ask a 2nd time, but if they ask a third time or more then they are being mean. We have asked Alfie to tell them that he has already told them and that by asking again they are hurting his feelings and to then tell the teacher.
Alfie has had alopecia since he was born and as such doesn’t know any different. We feel this is a positive as we have been able to educate Alfie about his alopecia.
Alfie has said that there are no positives to having Alopecia, but I think it has made him a stronger, more outgoing person. When he was younger he had quite a sensitive nature, but he has grown in strength and character as he’s got older and accepted his alopecia. He has recently asked to hold a “main part” in his school play and has joined a local Youth dance group (9 -11) with children from other schools who he didn’t know.
Alfie: My advice to any other children with alopecia would be to make sure you talk to your mum and dad about alopecia. Talking about it made me able to understand even though the talks we had sometimes made me sad. It also gave me some good things to say to people who were asking me about my hair or eyebrows.
Andy (Dad): We’ve always tried to discuss Alfie’s alopecia with him in a manner relevant to his age and in ways he could understand. We’ve always talked about it in front of him sensitively so that he knows that its not something to be embarrassed or ashamed of, just that’s its part of his life. We’ve focussed on the fact that everyone is unique and everyone has something to cope with.