Sa­line Health Foun­da­tion raises PANS/PAN­DAS aware­ness

The Saline Courier - - FRONT PAGE - By Elisha Mor­ri­son el­[email protected]­ton­courier.com

In honor of Na­tional PANS/ PAN­DAS Day, the Sa­line Health Foun­da­tion held an event Wed­nes­day at Sa­line Me­mo­rial Hos­pi­tal.

Foun­da­tion Di­rec­tor Matt Brum­ley told the crowd it has been three years since Arkansas of­fi­cially joined the na­tion in ded­i­cat­ing the day to PANS/PAN­DAS aware­ness.

Ac­cord­ing to the news re­lease for the event, PAN­DAS, Pe­di­atric Au­toim­mune Neu­ropsy­chi­atric Dis­or­der As­so­ci­ated with Strep­to­coc­cus, is a se­ri­ous, com­plex au­toim­mune dis­or­der that can af­fect peo­ple, (pri­mar­ily chil­dren) when a strep in­fec­tion trig­gers a mis­di­rected im­mune re­sponse, re­sult­ing in in­flam­ma­tion of the brain. The dis­or­der is char­ac­ter­ized by a sud­den on­set of neu­ropsy­chi­atric dis­or­ders, in­clud­ing se­vere anxiety, de­pres­sion, OCD, be­hav­ioral and learn­ing re­gres­sion, fa­cial tics and more. If strep can­not be linked to the on­set of symp­toms, PANS, Pe­di­atric Acu­teon­set Neu­ropsy­chi­atric Syn­drome, caused by a dif­fer­ent in­fec­tion should be con­sid­ered.

Sa­line Me­mo­rial CEO Michael Ste­wart spoke to the crowd. He said he sees the is­sue from the point of view of a fa­ther and that feel­ing of des­per­a­tion to help a child.

He said he un­der­stands those af­flicted have not had ac­cess to many re­sources to com­bat PANS/ PAN­DAS. He be­lieves this aware­ness day helps en­sure par­ents have the re­sources they need for di­ag­no­sis, treat­ment and ed­u­ca­tion.

He said the health sys­tem is proud to part­ner with the health foun­da­tion.

Physi­cians As­sis­tant Natalie Brad­ford also spoke. Brum­ley said with­out Brad­ford, the foun­da­tion and pa­tients wouldn’t be where they are to­day.

Brad­ford said she has been treat­ing PANS/PAN­DAS for two years. She un­der­stands the strug­gles, but said what she wanted to share was the sto­ries of hope.

She shared about a boy who was 10 and suf­fer­ing from rages when she be­gan treat­ing him. With the help of an­tibi­otics, he is 12 and in

re­mis­sion.

She spoke of a girl who had her sec­ond re­lapse and was able to get IVIG treat­ment through col­lab­o­ra­tion with the girl’s pri­mary care provider. Brad­ford said the girl is 95 per­cent back to how she was with­out PANS/ PAN­DAS.

She spoke of an­other boy bat­tling se­vere de­pres­sion as a re­sult of the dis­or­der and whose grades had been fail­ing. She said now he is an A and B stu­dent.

She en­cour­aged those af­fected in the crowd to share their sto­ries of hope so that peo­ple can see that each story is dif­fer­ent be­cause each child is dif­fer­ent.

While in­tro­duc­ing State Sen. Kim Ham­mer, Brum­ley told the crowd he be­came aware of PANS/PAN­DAS in Jan­uary of 2017. When he learned of it, he reached out to Ham­mer and they be­gan work­ing to­gether.

Ham­mer told the crowd that out of tragedy had come tri­umph. Those tri­umphs

in­clude rais­ing aware­ness, get­ting more in­di­vid­u­als in the med­i­cal pro­fes­sion to re­al­ize PANS/PAN­DAS is real and the for­ma­tion of a PANS/PAN­DAS ad­vi­sory coun­cil that in­cludes mem­bers of the House and Sen­ate and var­i­ous ex­perts.

He said soon Sa­line County will have the first clinic for treat­ment in Arkansas and the first west of the east coast.

Brum­ley fin­ished by say­ing that the large crowd in at­ten­dance is very dif­fer­ent from the first event three years ago.

He ex­plained that those with PANS/PAN­DAS have im­mune sys­tems that are mis­di­rected and at­tack the brain.

He be­gan work­ing on PANS/PAN­DAS af­ter his sons’ friend, Max Wal­lace, lost his life on Christ­mas

Eve 2016 be­cause of it. He said peo­ple have got­ten treat­ment be­cause of Max.

He en­cour­ages peo­ple to visit www.saline­health­foun­da­tion.org to learn about Max’s story and find re­sources on PANS/PAN­DAS.

ELISHA MOR­RI­SON/THE Sa­line Courier

Sup­port­ers and those af­fected by PANS/PAN­DAS gather for a photo af­ter an event com­mem­o­rat­ing PANS/PAN­DAS Aware­ness Day on Wed­nes­day at Sa­line Me­mo­rial Hos­pi­tal.

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