Alopecia is more than hair loss — it’s the impact it has on us. Our experiences can be very different, but whether we’ve lived with hair loss for months or for decades, we all know the difficult feelings: the sting of a stranger’s slightly too long stare, the prickle of annoyance from seeing a ‘crowning glory’ shampoo advert, the heartbreak of watching hair gather in the shower drain, the painful moment we struggle to recognise the face looking back in the mirror.

Today, some people in our wonderful community are experiencing something they never imagined possible — hair regrowth following successful treatment. Following last year’s recommendation by NICE for the JAK inhibitor treatment ritlecitinib to be made available on the NHS for those aged 12 and over with severe alopecia areata, many in our community have chosen to embark on this treatment.  

For some, this comes after years of living with alopecia. “Life-changing” is what we’ve heard several times from those for whom the treatment has worked.  And yet, along with the joy of much longed-for regrowth, there can be guilt, fear, and even a sense of isolation. Guilt, that others with hair loss are not eligible for the medicine or cannot access it. Fear, that the treatment might one day stop working and hair might fall out again.  And some might wonder: do I still belong to the alopecia community?

The answer is yes — you absolutely belong.

Being part of the alopecia community has never been about the amount of hair on our heads. It’s about what we’ve experienced, how we’ve supported each other, and the understanding we share. Regrowth does not erase our alopecia experiences — it simply adds a new chapter to our stories. Just as we have always wanted those who experience spontaneous regrowth to remain in our community, we also want those who experience regrowth from medication to stay with us too.

Alopecia UK is here for people with all types of alopecia, at all levels of severity, and stages of hair growth. If you are taking medication for alopecia, you are not ‘cured’. Your alopecia is being treated but you still have alopecia. If you are having hair regrowth, you may not feel you need support from Alopecia UK now or feel like you want to remain active in our peer support spaces, but we really hope that you will stay with us, follow Alopecia UK and support the work we do.

Alopecia UK was a key stakeholder in the NICE appraisal processes for both baricitinib (rejected by NICE) and ritlecitinib (recommended by NICE) and made strong arguments for the need for NICE-approved treatments for alopecia areata. We did a lot of work behind the scenes in providing information and data, as well as preparing for and attending meetings.  We expect there will be further NICE technology appraisals for new treatments in the future and Alopecia UK will work hard to advocate for a wider choice of treatment. As such, insight from people who have tried new treatments, either with success or not, will be more valuable than ever.

To anyone experiencing regrowth, whether because of medical treatment or spontaneity: you are still one of us. To those who have a type of alopecia that means they are unable to experience regrowth: we are here for you too. Your story matters. Your voice belongs here. And your experience — whatever it looks like — is a reminder of the complexity, hope, and resilience that defines our community.

The alopecia community is stronger when everyone feels welcome — those who proudly rock their bald heads, those who wear wigs, those who are newly diagnosed, those who have had alopecia for years, and those navigating the complicated feelings of regrowth. Alopecia is not a club you graduate from just because your hair returns. Your experiences make you part of this community forever. And so, we hope you will stick around.