It’s taken Ni­cola Far­ring­ton a decade to come to terms with her skin con­di­tion. But, she tells Joy Or­pen, she is now urg­ing oth­ers who are in the same boat as her to get help, and to try to put their ail­ment into per­spec­tive

Sunday Independent (Ireland) - Life - - HEALTH CASE STUDY -

Ni­cola Far­ring­ton (26) is hap­pi­est when, cam­era in hand, she roams around Wick­low’s in­cred­i­bly beau­ti­ful hills and val­leys, near where she lives. “Pho­tog­ra­phy is my pas­sion,” she says. “It also takes my mind off things.”

Among the “things” she is re­fer­ring to, is a par­tic­u­larly dif­fi­cult skin prob­lem that first ap­peared when she was 16 years old. “I started get­ting spots and cysts un­der my arms,” she ex­plains. “I thought it had to do with pu­berty. The cysts could be painful and would even­tu­ally burst, stain­ing my cloth­ing and leav­ing scars.”

None­the­less, she told no one about these prob­lems; not even her par­ents, whom Ni­cola de­scribes as in­cred­i­bly sup­port­ive, self­less and lov­ing. “I was too em­bar­rassed,” she con­fesses. “As a teenager, I avoided get­ting close to peo­ple — es­pe­cially boys. You’d never see me in togs or a skimpy top. And no mat­ter how nice my out­fit was, I’d al­ways wear a cardi­gan.”

Ni­cola used to fib and tell peo­ple she got the scars (which were caused by her skin con­di­tion) from get­ting scraped from jump­ing over a barbed-wire fence. “I’m a farmer’s daugh­ter, and that’s where I got that story from,” she says quite can­didly. As time went on, Ni­cola be­came more and more with­drawn, even though that was not her true na­ture. Then one day, a very big cyst on her in­ner thigh burst, caus­ing her a lot of pain. This time, in floods of tears, she did turn to her mother for help. “Mam took me to the doc­tor, who re­ferred me to a der­ma­tol­o­gist at Tal­laght Hos­pi­tal,” says Ni­cola. “I was told I’d have to wait two years for an ap­point­ment. Some 27 months later, I got a let­ter ask­ing me if I still wanted an ap­point­ment. When I said I did, they re­ferred me to Mount Carmel. But it closed the week be­fore my ap­point­ment.”

About two months later, Ni­cola was seen by Tal­laght Hos­pi­tal der­ma­tol­o­gist Dr Anne-Marie Tobin, at a clinic in Naas. “Within 10 min­utes, she had di­ag­nosed me with hidradeni­tis sup­pu­ra­tiva (HS),” Ni­cola says.

Ac­cord­ing to the Ir­ish Skin Foun­da­tion, HS is an au­toim­mune chronic skin con­di­tion, which is char­ac­terised by re­cur­rent, painful, boil­like lumps or ab­scesses, in the armpits, groin, pe­ri­anal area, but­tocks or un­der the breasts. The con­di­tion causes the ab­nor­mal block­age of hair fol­li­cles in ar­eas where cer­tain sweat glands (apoc­rine glands) are lo­cated, lead­ing to re­cur­rent in­flam­ma­tion, nod­ules and ab­scesses. The Foun­da­tion says that there has been very lit­tle dis­cus­sion about HS to date.

Dr Tobin gave Ni­cola some in­for­ma­tion leaflets. “I’d been hop­ing she would sim­ply give me a pre­scrip­tion and that that would be the end of it,” says Ni­cola. “But she had the un­pleas­ant task of telling me that HS was a chronic con­di­tion and that it was for life. So I at­tend her clinic on a reg­u­lar ba­sis. But for a while af­ter that, I lost heart, be­cause I now knew where this was go­ing to take me.”

It was a very bit­ter pill for Ni­cola to swal­low. She was only 23 years old; she was vi­va­cious, loved life and she worked and played hard. But hav­ing cysts and boils did lit­tle for her con­fi­dence or self-es­teem. “We live in a very im­age- con­scious world,” she ex­plains. “We are bom­barded by pic­tures of how we are sup­posed to look, and ba­si­cally that means be­ing flaw­less and per­fect. When peo­ple com­pli­ment me on my clear skin, or what­ever, I would think, ‘If only you could see what’s un­der­neath’.”

Ni­cola says while many friends have re­mained loyal and sup­port­ive, oth­ers strug­gled to un­der­stand her con­di­tion. “Re­la­tion­ships could be­come dif­fi­cult, be­cause I was try­ing to hide the symp­toms,” she ex­plains. “And I couldn’t al­ways make plans, be­cause painful cysts would sud­denly pop up.” And even though she had been an en­thu­si­as­tic GAA ath­lete, she felt un­able to con­tinue with sport, be­cause phys­i­cal ex­er­tion makes her con­di­tion worse.

But in spite of all this, Ni­cola has bounced back. “I used to let my skin prob­lems de­fine who I was, but not any more,” she says. “Hav­ing HS is only one as­pect of who I am. And if any­one has a prob­lem with me hav­ing this con­di­tion, then that is their is­sue, not mine. So, now I get on with my life and make the most of it. But I also know it’s OK to have a bad day and to have a lit­tle cry from time to time.”

Cur­rently, Ni­cola’s main fo­cus is on rais­ing aware­ness about HS. To date, she has been in­volved in four stud­ies, which have high­lighted some of the prob­lems. “I feel it’s very im­por­tant to get in­volved,” she says. “One of the main things that emerged from one study was the fact that while there are treat­ments for the phys­i­cal side of HS, there is no sup­port for the emo­tional as­pects. When I got my di­ag­no­sis, I was only 23, and that was a very trau­matic ex­pe­ri­ence for me.” At the time, Ni­cola was man­ag­ing a phone shop and loved it so much that­she hap­pily worked long hours. But as time went on, the stress made her con­di­tion worse, so in the end she was forced to re­sign.

She now works for a Wick­low phar­macy, where she is mainly con­cerned with the photo pro­cess­ing side of things. “My cur­rent em­ploy­ers are great,” says Ni­cola. “It’s a friendly, fam­ily-ori­en­tated busi­ness and they are very un­der­stand­ing about my health is­sues.”

Ni­cola has a care­ful daily rou­tine to pre­vent in­fec­tion and to man­age wound

‘When peo­ple com­pli­ment me on my clear skin, I would think, “If only you could see what’s un­der­neath”’

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