‘I will con­tinue to fight ev­ery day to live a healthy life’

Wal­dorf woman liv­ing with sar­coido­sis rais­ing aware­ness

Maryland Independent - - Front Page - By TIF­FANY WAT­SON twat­son@somd­news.com

There are very few dis­eases that leave doctors scratch­ing their heads. Sar­coido­sis is one of them.

De­spite mul­ti­ple mis­di­ag­noses, Wal­dorf res­i­dent Stacy Sneed is a 17year sar­coido­sis sur­vivor who still suf­fers from the dis­ease and hopes to raise aware­ness about it

in the com­mu­nity. She de­scribes her jour­ney as one filled with brav­ery and courage, be­cause she re­fuses to let the dis­ease con­trol her life.

Ac­cord­ing to the Amer­i­can Lung As­so­ci­a­tion, sar­coido­sis is an in­flam­ma­tory dis­ease that causes clumps of cells to form in ma­jor or­gans of the body, in­clud­ing the lungs, heart, kid­neys or brain. It of­ten mocks lu­pus or tu­ber­cu­lo­sis.

Com­mon symp­toms in­clude de­vel­op­ment of a hoarse voice, cough­ing, de­pres­sion, painful sen­sa­tions in ar­eas with bones, swelling of lymph glands in the chest, red­dish eyes and bumps on the skin, en­larged liver and de­vel­op­ment of kid­ney stones. It usu­ally strikes 20- to 40-yearolds and af­fects tens of thou­sands of peo­ple world­wide.

“With sar­coido­sis I’ve ex­pe­ri­enced many things that I never thought I would, but it’s mak­ing me a stronger per­son day by day,” Sneed said. “As I re­joiced dur­ing the years of my ill­ness be­ing in re­mis­sion, that old mys­tery dis­ease de­cided to come back in my life and this time it came with the vengeance. Stress trig­gered the ill­ness to flare up and I had to re­tire from my gov­ern­ment job, where I was em­ployed for over 20 years. I had to walk away to fo­cus on the heal­ing of my mind, body and soul.”

Her hus­band, Ken­neth Sneed, said they were still new­ly­weds when his wife was first di­ag­nosed with the ill­ness.

“I re­mem­ber pray­ing be­cause I was ter­ri­fied about the thoughts of los­ing the woman I loved,” Ken­neth said. “Wit­ness­ing my wife go­ing through her bat­tle with this dread­ful dis­ease was the hard­est thing I had to go through, but I had to re­main strong to en­cour­age my wife so that she could over­come the ef­fects of this dis­ease.”

Af­ter de­liv­er­ing her youngest child, Kevon, in 2000, Stacy be­gan ex­pe­ri­enc­ing a per­sis­tent dry cough, short­ness of breath and swelling of her lymph glands. One mis­di­ag­no­sis af­ter an­other — acute si­nusi­tis in­fec­tions, al­ler­gies, an al­ler­gic re­ac­tion to par­tic­u­lar types of an­tibi­otics — stacked up. Mean­while, she was sent home with an­tibi­otics and con­tin­ued to suf­fer.

“Le­sions were build­ing up in­side my nose so much that my nos­tril be­came dis­fig­ured and I was un­able to use the bath­room reg­u­larly. I went from a coura­geous, hard­work­ing, en­er­getic per­son to some­one who had prob­lems with breath­ing, sleep­ing, walk­ing, talk­ing, driv­ing and ex­treme fa­tigue. I was fight­ing for my life,” Stacy said.

Sev­eral of Stacy’s fam­ily mem­bers had sar­coido­sis — her un­cle and grand­mother, specif­i­cally — so, later, she had her doctors test her for the same dis­ease. Test re­sults showed she did have it, but the re­lief of a di­ag­no­sis was tem­pered by doctors telling her it has no cure.

Stacy said she was pre­scribed pred­nisone to treat her sar­coido­sis, but the drug had painful side ef­fects: mi­graines, weight gain, hal­lu­ci­na­tions and a dis­fig­ured nose.

“When my nose be­gan to spread com­pletely across my en­tire face I was called names such as mon­ster, ugly, and I had a brick thrown in my face. Ba­bies would cry, peo­ple would stare at me in dis­be­lief when they saw me out in pub­lic. I be­gan to feel like I was some type of cir­cus an­i­mal,” Stacy said.

The many years of us­ing pred­nisone did not help, so Stacy’s doc­tor sug­gested she be­gin a low dose chemo­ther­apy treat­ment.

“I had to take the treat­ment ev­ery three weeks and it helped the ill­ness go into re­mis­sion. My nose be­gin to look nor­mal and I be­gan to feel bet­ter,” Stacy said. “I started ex­er­cis­ing and eat­ing healthy, med­i­tat­ing and pray­ing for God to re­build my life back men­tally and phys­i­cally and my new doc­tor re­moved me from tak­ing chemo.”

The dis­ease greatly af­fected the lives of her chil­dren, too.

“When my mom was di­ag­nosed with sar­coido­sis, it felt like a part of me was slowly go­ing away,” said son Kevon. “See­ing my mom go through all of the pain she was en­dur­ing and chemo treat­ment made me worry about my mom ev­ery sin­gle day. I thought I was go­ing to lose her. When my mom sur­vived, it showed me to not take your mom for granted and love her while she is here be­cause you only have one mom.”

“I was very sad be­cause I didn’t want to lose my mother,” said Ken­neth Sneed, Jr. “It was ter­ri­ble for me, but to be able to say my mother is still here is a bless­ing. I hope that peo­ple learn that any given time your life can change and more im­por­tantly, if you have any symp­toms of sar­coido­sis, please seek help by go­ing to the doctors be­fore the ill­ness flares up and be­comes un­con­trol­lable.”

Ken­neth Jr. said he cried ev­ery night as a child for his mother to get bet­ter.

“My mother is a hero, an icon and a fab­u­lous sur­vivor,” said Sarita Sneed, her daugh­ter. “Sar­coido­sis af­fected my mom’s outer ap­pear­ance and kids at my school would make fun of her. That would hurt my feel­ings and I cried be­cause of it. How­ever, my mother is so strong that she told her­self she had no choice but to fight this bat­tle.

“She de­vel­oped so much knowl­edge about her ill­ness and en­cour­ages oth­ers not to give up on their bat­tles, to love them­selves and ap­pre­ci­ate what they have,” she con­tin­ued. “The sar­coido­sis didn’t stop her; she stopped the sar­coido­sis.”

Stacy is also an en­ter­tain­ment book­ing agent and the CEO and founder of Women of Life Chang­ing Inc. She has worked closely with numer­ous en­ter­tain­ers in­clud­ing three-time Tony Award win­ner Hin­ton Bat­tle, chore­og­ra­pher Sean Bankhead and Mitchell Kelly from TV show “So You Think You Can Dance.”

Although the sar­coido­sis has re­turned in re­cent years, Stacy con­tin­ues to fight and fo­cus on ed­u­cat­ing those who are suf­fer­ing with the ill­ness or any­thing sim­i­lar. She said sar­coido­sis is an ill­ness that tends to be over­looked, and she hopes to spread the word to make a dif­fer­ence in the com­mu­nity.

“I will live life to the fullest and con­tinue to fight to put my ill­ness back in re­mis­sion,” Stacy said. “I feel my life changed for the best, I will not let sar­coido­sis con­trol me any­more; I will con­trol sar­coido­sis. I will con­tinue to fight ev­ery day to live a healthy life.”

STAFF PHOTO BY TIF­FANY WAT­SON

Stacy Sneed, an en­ter­tain­ment book­ing agent and the CEO/ Founder of Women of Life Chang­ing Inc., in 2016. She is a Wal­dorf res­i­dent liv­ing with sar­coido­sis, an in­flam­ma­tory dis­ease that af­fects the or­gans.

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