I went bald at 15 – teachers laughed at ‘my dodgy haircut’ and strangers ask if I have cancer but now I have hope
A TEENAGER who lost all his hair just as his friends started shaving says a newly approved alopecia drug is a ‘game-changer’.
Zak Hope, 17, says if he’s prescribed the new treatment it will be the ‘best gift ever’, having struggled through his GCSEs.
He told Sun Health: “I’ve been totally bald for two years and it’s been a really hard time.
“Just when all of my friends were starting to talk about shaving their faces, my hair was falling out.
“I didn’t know what to do and there were so many days when I couldn’t face school.
“I was constantly having to deal with comments and sniggers and it became too hard."
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Zak, who has a supportive friendship group, says: “Some of my teachers were so insensitive with one even saying to me, ‘You’ve had a dodgy haircut there Zak’.
“Another time, just as I was getting off the school bus, the driver asked me if I had cancer, when I told him, no, I had alopecia, his reply was, ‘Well it must suck being you’. Yep, it does.
“This drug could be a game changer for me.”
NEW DRUG
NICE finally approved Ritlecitinib, brand name LITFULO, which reverses the autoimmune condition for one in five patients.
Evidence from clinical trials showed nearly 25 per cent of adults and adolescents taking LITFULO saw significant hair regrowth that covered 80 per cent or more of their scalp their 24 weeks.
After almost a year, this increased to 40 per cent of patients.
Ritlecitinib, taken once daily, is a type of janus kinase (JAK) inhibitor, which works by suppressing the immune system.
It reduces the enzymes that cause inflammation and subsequent hair loss at the follicle.
It has been recommended by NICE as an option for treating severe alopecia areata in people aged 12 and over.
TOUGH TIME
Zak, from Bude, Cornwall, has had alopecia universalis, meaning he has lost all of his hair on the scalp and body, since February 2022.
His mum Natasha, 49, a yoga teacher and writer, says: “Zak first developed a bald spot on his head at the start of the pandemic in 2020.
“He’d been really ill from a virus and I think that combined with stress was the trigger."
I didn’t know what to do and there were so many days when I couldn’t face school
Zake Hope
The patch was treated with a topical steroid cream and the family assumed the ordeal was over.
“However, another patch appeared at the beginning of the following year in 2021," says Natasha.
“We were prescribed a stronger, topical steroid, but I noticed as the hair started regrowing in one patch, others were forming.
“By the end of 2021, his hair was shedding at an alarming rate and he had a huge bald patch on the back of his head.
“He’d always had thick, beautiful hair, so he was able to cover the patches for the most part but it was getting increasingly difficult.
“I cleared clumps of hair from his bedroom every day which was incredibly traumatic."
Zak was offered the oral steroid Prednisone, which has potential side effects of heartburn, increased risk of infection, weight gain and mood disturbance, according to Alopcia UK.
Long-term use is associated with serious side effects including diabetes, high blood pressure and bone thinning.
Natasha says: “We continued to try to treat it holistically and increased his vitamins, made dietary changes and even tried acupuncture and allergy testing.
“Nothing worked and his hair continued to fall.
“By February 2022, he’d lost all of his hair on his head and his eyelashes and brows were going to.
He’d always had thick, beautiful hair, so he was able to cover the patches for the most part but it was getting increasingly difficult
Natasha
“I must confess I don’t think I helped things and kept crying as I found the whole situation so upsetting and there didn’t seem to be any support available.
“Unfortunately people’s comments compounded the issues, with things such as ‘it’s only hair’ or ‘at least it’s not cancer’ being said to us so frequently.
“It’s not just hair. People don’t realise that your hair protects your body and that your risk of respiratory infections increases, as does hearing loss and visual impairments.
“Zak is always ill and he’s already been told that his eyesight in his left eye has been badly compromised and he needs glasses.”
Hair, including the tiny hairs in the nose, ears and eyelashes, are protective against the environment, keeping debris away.
DEEP DEPRESSION
Natasha says: “Zak sunk into a really dark depression in 2022 and ended up missing three months of school, which was a worry as it was GCSE year.
“However, I didn’t put him under pressure to go in as his mental health was more important."
Eventually, the family became aware of JAK inhibitors, thanks to a doctor at their GP surgery with a special interest in alopecia.
Natasha says: “We’ve been so lucky that our GP and dermatologist have been so helpful as we’re aware it’s not always the case.
“The news that Ritlecitinib will be available to people over age 12 is fantastic.
“I’m a member of a few online groups and have been reading about the wonderful success stories relating to this medication.
“Zak’s dermatologist has been so wonderful and we’ve got an appointment scheduled to discuss Zak taking the new medication.
“He’s hoping to start university this year, and it’s my dearest wish that he begins as hairy as he ever was.”
This drug could be a game changer for me
Zak Hope
Brave Zak says: “Once all of my hair had gone, I thought to myself I’ve just got to get on with it, and for the most part I have.
“I’m working hard at school, and really hope to go to university this year.
“Some days are more challenging than others, especially if someone says something, or I’ve been at work and had more stares than usual.
“Hair will hopefully mean that I’m not constantly fighting a cold and can go outside in the wind again without my face being covered in tears and snot - which happens to me at the moment.
“It will be so nice to wake up in the morning and not have to unglue my eyes open and use super strong eye drops just to be able to see.
“I just want to look in the mirror and like the image I see, rather than how I feel at the moment.
“I’m not sure if my hair will ever be as thick as it was, but some hair, any hair, will be the best gift ever.”
GOOD NEWS
Sue Schilling, CEO of the charity Alopecia UK, said: “For far too long, patients with alopecia areata have gone without a licensed treatment option available via NHS pathways.
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“If new treatments are only available privately, it becomes a case of the ‘haves and the have nots’.
“This latest NICE recommendation will go some way to address this.”
What is alopecia and what causes it?
About two per cent of the population will experience alopecia at some point in their lifetime, with around one in every 4,000 developing the condition each year.
It can start at any age but is most common in early adulthood and can lead to a lack of all hair including eyelashes and eyebrows, nasal hair and public hair.
Alopecia areata causes patches of baldness about the size of a large coin.
“Alopecia” is the medical term for hair loss and “areata” means that it occurs in small, random areas. There are various classifications, including:
- Alopecia areata totalis: Total hair loss on the scalp
- Alopecia areata universalis: Total hair loss on your scalp and all body hair
The causes of alopecia areata are not fully understood but the loss of hair is because of inflammation around the hair follicles.
The cause of the inflammation is unknown but it is believed that the immune system, which normally protects the body from infections and other diseases, misfires and attacks the hair follicles.
Therefore, it is understood to be an autoimmune condition, says Alopecia UK.
Genetics may be behind the condition, but there are other things thought to trigger it, including a virus, iron deficiency or stress. Studies are not conclusive.
For women, sometimes birth can trigger postpartum alopecia.
In most cases of alopecia areata, hair will grow back in a few months to a year. At first, hair may grow back fine and white, but over time it should thicken and regain its normal colour.
There is no cure for the condition, only treatments that are not guaranteed to work.
People with alopecia may need to take extra precautions, including protecting their skin and eyes when outside and preventing stress.