Alopecia UK would like to give awareness to Frontal Fibrosing Alopecia as we have noticed an increase with individuals contacting us regarding this type of hairloss. Within the UK there is very little support and predominately USA based (www.carfintl.org
), however there is a London support group (email: email@example.com
) and there is also a group within Alopecia World.
Very soon a Hairloss Priority Setting Partnership will be launching for both non scarring and scarring types of alopecia to identify areas of research and we'd encourage all groups to participate - please register to Get Involved.
In the meantime, here is some information and for those with a confirmed diagnosis you might be interested in a current genetic research (see below).
WHAT IS FFA?
Frontal fibrosing alopecia (FFA) is a newish type of hair loss. First diagnosed in 1994 by Kossard, also known as Kossard Syndrome. Dermatologists have now declared that FFA is an epidemic because there are so many new cases around the world.
FFA is a variant of Lichen Planopilaris. FFA is a cicatrical alopecia, this means it is a scarring alopecia. The hair follicle scars over so that once hair is lost it cannot regrow because the hair follicle has skin grown over the top of it.
PATTERN OF HAIR LOSS
Hair is lost from the front hair line, moving backwards over your head, also the sides of your hair and sometimes the back hair line. Eyebrows and eyelashes can lose hair. Body hair is often lost – arms and legs. Groin and underarm hair usually remains.
HOW MUCH HAIR WILL I LOSE?
Varies between 2cm – 8cm from the front hair line. Dermatologists cannot tell you how much you will lose or how quickly. It does burn itself out but can’t tell when that will happen.
GETTING A DIAGNOSIS
Ask your GP to refer you to a dermatologist.
You must have a scalp biopsy done to confirm you have FFA. Scalp biopsy is not painful. Dermatologist takes a tiny piece of skin from your scalp where the FFA is active. You only need one very small stitch afterwards and the nurse at your GPs surgery removes the stitch about 10 days later.
Genetic susceptibility + environmental factors
A lot of research is ongoing into the cause of FFA. DNA samples (saliva) are needed by Dr Christos Tziotzios at Guy’s Hospital, London, UK. You don’t have to live in the UK to take part in this research. If you email Dr Tziotzios he will telephone you and have a quick chat (he is very friendly) then send you a saliva collection kit. He needs as many DNA samples as possible, please donate.