Family life and alopecia

Relationships with family members were often important for young people with alopecia. Many said their families were there to offer comfort and support in dealing with the emotional side of having alopecia.

Elizabeth says, “There have been times when I would cry over it and my mum’s just been there to hold me.” A few people said they found it hard to be around family when they were upset or worried about alopecia. Krista thinks she pushed away her partner, but sometimes talked more to her dad and stepmum.

Annie Y’s parents treated her alopecia as not a problem, so she has never really seen it as a problem either.

Age at interview 23

Gender Female

Age at diagnosis 3

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The best support for Meghan is when other people, including her family, behave naturally’ around her.

Age at interview 20

Gender Female

Age at diagnosis 10

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For Ben, even though everyone in his family was supportive, it was his mother who was most emotionally involved’ and the best person to talk to.

Age at interview 18

Gender Male

Age at diagnosis 14

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Many people talked about their parents and guardians, but siblings were often an important source of support too. Kayla’s younger brother used to make comments when she changed her wig, but he’s more aware that it’s a sensitive issue now he’s older. Meghan’s siblings are a lot older than her and her sister in particular has always given lots of support.

Emilie’s brother wrote in to a TV programme when she had been cross about an interview they had shown with someone with alopecia.

Age at interview 18

Gender Female

Age at diagnosis 4

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Family were often very involved at the early stages of having alopecia. Sometimes family members, particularly their mums, went with young people to see the doctor and discuss treatment options. Family members sometimes helped with applying treatments and managing the visible appearance of hair loss (e.g. hair styling or helping them get their first wig). Annie X’s mum did lots of research about alopecia and paid for alternative therapies like homeopathy and hypnotherapy. Elizabeth’s sister is training to be a hairdresser and offered for Elizabeth to try out a new salon therapy.

Kayla’s aunt is a hairdresser who helped her to style her hair and created hair patches from extensions to cover areas of hair loss.

Age at interview 20

Gender Female

Age at diagnosis 4

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Michael’s mum supported him emotionally and arranged for him to see a counsellor.

Age at interview 19

Gender Male

Age at diagnosis 13

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Laurel talks about the ways her family show her support.

Age at interview 17

Gender Female

Age at diagnosis 15

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Family members responded in a variety of ways to the young person’s alopecia. Some family members avoided talking about it, especially when it was first diagnosed. Imogen feels much of the family on her dad’s side “don’t even acknowledge” her alopecia, but says her mum and nan are “really supportive” and have “been my backbone throughout this.” Others were surprised and sometimes concerned at their family’s emotional responses. Michael thinks alopecia can “put a strain on not only the person, but the whole family.” Annie X remembers feeling embarrassed with her mum “bursting into tears” when the doctor said it was alopecia and they had to bring out another doctor to reassure her. Laurel recalls her mum crying as she shaved off part of Laurel’s hair, which “made it worse” for her. Arti didn’t feel she could talk to her family about how she was feeling and she found seeing a counsellor was helpful.

Some young people with alopecia found themselves comforting or supporting other family members. Hannah said, “A child can be more resilient than the adults and the adult might actually need the support.” Rosie remembers that her mother was very upset about her hair falling out at first but changed when she saw that Rosie wasn’t upset and now they “joke about it quite a lot.” Kayla’s dad lived abroad and was “a bit awkward about it”, but she thinks it’s difficult for fathers to know how to talk about “their girl’s hair”. Ben feels it was hard for his parents because they “couldn’t do anything to stop it” when his alopecia was making him unhappy.

When Krista had alopecia, she was really worried about the impact on her young daughter and step-daughter.

Age at interview 23

Gender Female

Age at diagnosis 22

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Hannah compares her mum and dad’s very different approaches to her alopecia and ways of giving support.

Age at interview 21

Gender Female

Age at diagnosis 16

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Annie X’s mum has done a lot to help her. But Annie X doesn’t want to “load stuff onto” her parents and says her mum gets really stressed about not being able to fix things.

Age at interview 15

Gender Female

Age at diagnosis 11

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A few people said that a stressful time at home, like the death of a grandparent, might have been a trigger for their alopecia. Quite a few people thought their alopecia might be “in the genes” and Hannah wondered if her own children might have it. Rochelle and Beth both had aunts who had alopecia. Emily thinks having a family history of other autoimmune conditions made her “quite aware” about the genetic background of alopecia areata.

Over time, many people felt their alopecia became a normal part of their family and home lives. Although it could still be upsetting at times, some people found humour shared with their family was a good way to manage the emotional side of alopecia.

Emilie’s boyfriend’s dad also has alopecia and she talks about how he makes her laugh about it.

Age at interview 18

Gender Female

Age at diagnosis 4

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Krista thinks it’s important to try and find some funny sides to living with alopecia.

Age at interview 23

Gender Female

Age at diagnosis 22

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