The Tribune

By ALESHA CADET

Tribune Features Reporter

acadet@tribunemedia.net

AS the United Kingdom last week observed Hidradenitis Suppurativa Awareness Week, here in the Bahamas persons from New Providence as well as the Family Islands wanted to do their part in shining a light on the painful chronic skin disease by sharing photos of themselves via social media wearing the colour blue, which is the official colour representing the condition.

Hidradenitis suppurativa (HS) is the name of a chronic skin disease that is not well known and only rarely diagnosed, even though many suffer from it. According to the Mayo Clinic, HS is a chronic skin condition that features pea-sized to marble-sized lumps under the skin. The lumps associated with hidradenitis suppurativa are usually painful and may break open and drain foul-smelling pus. The disorder tends to start after puberty, persist for years and worsen over time. HS is most common on the underarms and groin.

Living with HS since 2000, local businesswoman and health coach Sandena Neely continuously seeks to promote and acknowledge the importance of sharing information on this little known medical condition.

To commemorate the awareness week locally, Ms Neely assisted in a social media informational campaign on Facebook, Instagram and Twitter and made an appearance on a radio talk show on “Be Blue Day”, which was observed on Friday, June 10.

“The social media campaign is unique because it draws direct attention to an invisible illness that many persons across a wide spectrum struggle with but never mention. Persons freely post their meals, their thoughts, their feelings, their relationship woes, their travel experiences on social media, however, there is nothing even remotely glamorous about hidradenitis suppurativa, and we thought it best to spark the conversation. The awareness and informational campaign on social media has encouraged a lot of persons to come forward and seek assistance and support,” Ms Neely told Tribune Health.

She said the radio talk show offered a dynamic avenue because a wide cross section of the population had the opportunity to hear about HS, “and the beauty of radio is that it reaches a segment of persons who either may not frequent or be engaged with social media, so this was a great tool to use to raise awareness on the debilitating condition.”

Ms Neely said the Be Blue Day was a fascinating experience for the second year in a row.

“It was interesting to see persons posting their pictures with the hashtag #bebluebahamas, and under one thread on Facebook someone commented that they were quickly checking Google to find out what HS was all about, and that is our desired effect. We want to spread the word on this disease that is more common than one would imagine. Education is everything with HS, and the more you know, the more help you can receive,” she said.

Ms Neely said the war on HS, which many sufferers describe as a “hidden plague”, can be won. She has come to learn through her own experiences over the past few years that HS can be controlled. Poor diet and other factors can make the condition reoccur, she added.

“I have not been able to find concrete statistics in the Bahamas, however, I am aware of many persons that are suffering with this disease and seeking medical treatment locally and abroad. I feel that Bahamians should check their gut health; improper gut function is at the root cause of many prevalent illnesses, and promoting healthy gut flora can result in a healthier life,” she said.

While there is no specific HS organisation in the Bahamas, to promote the cause, Ms Neely along with other team members are in communication with the Hidradenitis Suppurativa Trust in the UK, as they are the official host of the HS Awareness Week. It is their plan to have an organisation and support group in place for 2017’s awareness week.

“With this disease, education is key, so shining a light on this initiative is critical. The results of last year’s awareness week are astounding; persons from all backgrounds were able to find us and access helpful information and resources, and that is our goal – to shine the light in order that it may point persons in the right direction for hope and healing,” said Ms Neely.