The Tribune

By ALESHA CADET

Tribune Features Reporter

acadet@tribunemedia.net

HIDRADENITIS Suppurativa is the name of a chronic skin disease that is not well known and only rarely diagnosed, even though many suffer from it.

The United Kingdom last week observed Hidradenitis Suppurativa (HS) Awareness Week focused on recognising, sharing knowledge of the debilitating skin disorder and offering support to the sufferers of it.

Meanwhile here in the Bahamas, a local businesswoman and health coach is sharing her personal story about dealing with what she describes as an awful and debilitating medical condition.

“Believe it or not, there are very many people in the Bahamas who suffer from this illness, however, it is a very taboo illness and therefore people choose to suffer in silence and prefer anonymity,” Sandena Neely told Tribune Health.

“I would like my story to be featured to raise awareness on this issue, state what the condition is and bring it to the forefront so that persons faced with this challenge can know that there is hope and help in real, immediate and practical ways. One of my main goals is to create a support group for persons afflicted with this condition.”

According to the Mayo Clinic, HS is a chronic skin condition that features pea-sized to marble-sized lumps under the skin. Also known as acne inversa, these deep-seated lumps typically develop where skin rubs together, such as the armpits, groin, between the buttocks and under the breasts. The lumps associated with hidradenitis suppurativa are usually painful and may break open and drain foul-smelling pus. In many cases, tunnels connecting the lumps will form under the skin. The disorder tends to start after puberty, persist for years and worsen over time.

In Ms Neely’s case, she said her experience living with the condition as extremely painful. She said because the disease is not well known, it can go undiagnosed and she did not know she had HS until 2011, after living with it for 11 years.

“The abscesses turn into tunnels and caves, making movement difficult. Wearing underwear is uncomfortable, sometimes clothing in general can exacerbate the problem. Shaving is a problem, wearing deodorant and sweating is a disaster when you’re having a flare-up, therefore exercise is almost intolerable. The surgeries and procedures are a relief, however, the recovery time is very long and gruelling with loads of wound care follow-ups. Antibiotic usage for the disease is also another issue due to the various side effects. Psychologically, the disease causes depression, isolation, sadness and more,” said Ms Neely.

Using her experience and knowledge to promote awareness of the condition in the Bahamas, Ms Neely recently ran a campaign for a local version of Hidradenitis Supparativa Awareness Week, utilising social media sites such as Instagram, Facebook, Twitter and Tumblr, and receiving a very positive response.

“Wednesday June 10 was observed as ‘Be Blue Day’ to raise awareness for HS,” she said. “Persons wore blue and posted their pictures to social media with HS awareness hashtags.”

She is looking forward to keeping the awareness rolling throughout the year via newspaper articles, radio talk shows and connecting with persons suffering from HS through referrals from dermatologists, surgeons and other doctors and practitioners.

“I am not aware of any statistical data as to the percentages of persons affected by HS in the Bahamas,” she said. “My knowledge is purely anecdotal and I have found through talking with people that many persons have boils or abscesses or cysts but that they do not discuss it with anyone. Sometimes they do not seek medical help either because of the fact that the condition can affect the pubic area and the inner extremities of the buttocks and the anus. So I do not know exact numbers. However, I am making a clarion call for persons to contact me so that they can come to a safe, confidential space to seek help and get relief, and possibly find healing.”

While she does not know whether or not HS can be prevented, Ms Neely said she knows that it can be managed and controlled to the point where it is not likely to resurface. Poor diet and other factors can make the condition reoccur, she added.

“I feel that Bahamians need to be aware of the fact that our diet is one of our biggest problems. And I know that I’m not the first person saying this, however, I have to continue to sound the alarm on the fact that we need to learn how to change our relationship with food from a negative one to a more positive and beneficial one. Another critically important issue that I think Bahamians should be aware of is leaky gut syndrome, or intestinal permeability. Persons would probably be very surprised to know that they have it and the havoc that it is wreaking to their bodies, so I would like to put that out there and stand firm in stating that persons should actively monitor their gut health; very, very important,” said Ms Neely.

For clarity, she said it must be stated that HS is not contagious at all.

Based on her research as a person living with HS and as a health coach, Ms Neely said she cannot guarantee that people can reduce their chances of getting HS, because there is still no definitive answers from the medical world on the exact origins of the disease. However, she would say that a super clean diet and a lifestyle which incorporates things like fun and play, self-care, reduced stress, movement, physical activity, a sound spiritual practice and meditation can go a long way in ensuring that even if HS surfaces, it can be controlled in a more proactive way.