Expert: Learning How To Live With Alopecia
Alopecia Areata is an auto-immune disease which affects about 2% of the population. It happens when the body’s immune system attacks the hair follicles; and usually first manifests in the form of bald patches on the scalp. However, it is a disorder that can impact not only the scalp, but also eyelashes, brows, and the entire body.
But what causes it, and what are the options for treatment?
What causes Alopecia?
The immune system makes white blood cells and antibodies, to protect against foreign objects such as viruses. But in auto-immune diseases, the immune system mistakes part of the body (in this case the hair follicle) as foreign; causing inflammation, and leading hairs to become weak, and fall out.
It's not known exactly why Alopecia occurs. Possible triggers include infection, medication or a shock to the system such as surgery, crash dieting, or severe stress; but it is more likely to occur if there is a family precedence. In fact, about 1 in 4 people with Alopecia have a close relative who has been affected by the condition.
Alopecia Areata can be seen in children as young as 3 or 4. For most, regrowth occurs within a few months; but the loss/growth cycle can be repeated throughout life, and there’s no guarantee that all lost hair will grow back. Usually, symptoms of the condition tend to be milder if it first develops at an older age. Alopecia starts with the loss of patches of hair; about the size of a large coin. When this affects the entire scalp, it’s known as Alopecia Totalis; while if it progresses to the entire body (in 1 - 5% of cases), it is called Alopecia Universalis.
What can be done to treat Alopecia?
Mild cases of Alopecia Areata often resolve without treatment. If less than half of the scalp is affected, there's about an 8 in 10 chance of full hair re-growth within one year; though with more extensive hair loss, this is less likely. However, even if a patient's hair re-grows after an episode of Alopecia, it is common to have one or more recurrences of the condition throughout one's life.
There’s no permanent cure for Alopecia. Steroid creams or injections can stimulate the hair follicles, but oral steroids are avoided due to their side-effects. Topical Immunotherapy is often the most effective treatment for those with extensive Alopecia Areata; though this is only available from certain skin specialists.
What to do if you think you, or your child have Alopecia?
If you recognise the signs of Alopecia, go to your GP for further advice. Ensure you get a complete check, and ask to be referred to a dermatologist. Mention any current medication, as hair loss can be a common side effect.
Remember, bald patches are not always Alopecia: Sometimes children have bald patches on the scalp before a regular pattern of permanent hair starts growing; and babies often develop a bald patch caused by lying down. This should solve itself as your baby begins to support his own head, and can spend more time sitting up. Ringworm or Impetigo are also possible causes of abnormal hair loss: Here, the child may complain of an itchy or tender scalp, and you might see some redness and scaling in the bald area.
Explaining Alopecia to your child
Explain Alopecia in simple terms, appropriate to your child’s age. Though it may seem you’re sparing your child distress by not discussing their hair loss, this can actually cause more anxiety; if they are aware, but do not know what it happening. Although it’s very important to provide reassurance to your child that Alopecia only affects the hair and doesn’t make them poorly, be clear that their feelings are valid, and it’s ok to feel bad or even cry: Alopecia throws a lot of different emotions at us! If your child struggles to move beyond these feelings, you may wish to consider exploring the option of counselling.
Let your child know that they are not alone. It can help if they meet other children with Alopecia, which is why Alopecia Ireland’s ‘buddy system’ can be such an invaluable resource. Also encourage your child to continue activities they enjoy, rather than isolating themselves. Wanting privacy is understandable, but it’s important that having Alopecia doesn’t mean your child misses out on important experiences and friendships.
Living With Alopecia
Be open with your child’s school, and reach an agreement with the headteacher to avoid your child being challenged about wearing hats, wigs, or make up (to replace lost eyebrows.) Be aware that they may offer guidelines in terms of appropriate hats, using school colours, or natural hair coloured wigs; and consider having a ‘hat/wig pass’ for your child in case they are challenged by other teachers.
Some children have found communication via a whole school assembly, or a note home to parents can be effective to answer all questions at once; encouraging openness rather than rumours. However, it is important to listen to your child, as they may have their own ideas on how they wish to handle a situation.
It’s important to boost your child’s confidence, but explain to them that they may encounter the occasional ‘starer’. They might have stared at someone in the past, because they dressed or looked slightly different; so use this as an example: It happens, but is not meant to be malicious. Develop ways for them to deal with staring, rather than fearing it - a smile is often the best option; as it’s amazing how just making eye contact and smiling at a person will stop unwanted attention. Hard as it is; if your child is as relaxed as possible about their alopecia and adopts an attitude of 'Yes, I have Alopecia, It’s not a big deal’ attitude; it’s likely they’ll have a more positive experience.
If they face questions from their peers, perhaps have a standard answer or explanation your child can use, such as: ‘I’m not sick, I have Alopecia and that means I don’t have hair.’ It can become more of an issue as children get older; becoming more self-critical, and conscious of what others think of them. Encourage your child to have someone to confide in. It might be you, or they might find it easier to talk to a friend, a counsellor, or a buddy.
Learning to Embrace Alopecia
Initially your child’s hair loss can be very scary for you as a parent. But part of the journey is learning to treat challenges in a positive light. If they want to cover their hair loss, perhaps have a day out shopping for new hats, scarves or wigs. Make sure you allow your child to lead in choosing what they’d like, as this will help them gain confidence.
Read Next: How To Nurture Your Children's Mental Health
Very young children are often not as affected by having Alopecia; but the reactions of those around them will have a big impact on how they see their hair loss. The more relaxed and comfortable you are about your little one’s alopecia, the more laidback and confident they will be. Their relationship with Alopecia can change over time, but be assured that there are plenty of other people out there, dealing with just the same experiences.
For more information, and advice on support groups and wig/make up resources; go to alopeciaireland.ie or check out their fab facebook page. Also, check out the amazing work the Rapunzel Foundation do through their fundraising and ‘hair raising’; creating Freedom Wigs to improve the lives of those living with hair loss.
This article is part of a special series looking at some of the different unique challenges parents and children face. For more, go to our Child Health section.