Am­bi­ka Ja­gas­sars­ingh

Re­porter

am­bi­ka.ja­gas­sars­ingh@guardian.co.tt

Imag­ine wak­ing up every morn­ing, not know­ing what to ex­pect from your body.

This is what 30-year-old Kim­ber­ly Wil­son faces every sin­gle day.

De­spite nu­mer­ous doc­tor vis­its and med­ical test­ing, the phar­ma­cist is still in the dark about her con­di­tion.

She’s classed as hav­ing an au­toim­mune dif­fer­en­tial di­ag­no­sis which in­volves test­ing for mul­ti­ple con­di­tions un­til the cause is found.

“I don’t have a def­i­nite di­ag­no­sis, we have ideas of what it might be, but to say that is 100 per cent some­thing, no, we don’t.”

Last year, the Arou­ca woman’s life was turned up­side down by un­ex­plained symp­toms.

“The first thing that hap­pened to me was I would get up on a morn­ing and I would no­tice that my en­tire body had bruis­es, al­most as if some­body hit me. The bruis­es hap­pen any­where from my feet to my face, back ...I had these flares every two days, and I had 48 episodes back-to-back at this point.”

Vis­its to ENT doc­tors and oph­thal­mol­o­gists to find an­swers al­so proved fu­tile.

“I felt like my eye want­ed to fall out of my face like it had an in­creased pres­sure in my head and from the eye pain, and I start­ed hav­ing nose­bleeds. My nose would just ran­dom­ly bleed. And in ad­di­tion to that, well, the headaches and it was ex­cru­ci­at­ing.”

Even­tu­al­ly, Wil­son al­so be­gan suf­fer­ing from stom­ach aches.

“They found a tu­mour on my ovary, well some call it a ter­atoma, so this is ba­si­cal­ly made up of mul­ti­ple cells, hair, teeth, bone, is a lot of dif­fer­ent types of tis­sues com­bined.”

This had to be re­moved sur­gi­cal­ly to en­sure at least one com­pli­ca­tion was re­moved from Wil­son’s list of med­ical is­sues.

“Be­cause of how the tu­mour was in­ter­twined in my ovary, and you know, the doc­tor, she had to re­move my ovary and fal­lop­i­an tube just to be safe, be­cause we did not know if it was can­cer­ous.”

Af­ter re­mov­ing the tu­mour, things did not im­prove for Wil­son. She de­vel­oped a symp­tom called my­oclonic jerks, which are in­vol­un­tary mus­cle twitch­es.

“My im­mune sys­tem just went even more hay­wire (af­ter the surgery to re­move the ter­atoma),” she re­vealed.

“What hap­pened is that I end­ed up with some­thing called my­oclonic jerks. So if I’m hold­ing an ob­ject, it would just flick out my hand in­vol­un­tar­i­ly and I would have these jigs hap­pen­ing, where I would just kind of, you know, jump, and I had to be on oth­er med­ica­tion for that. And I still have it some­times, not as fre­quent­ly as be­fore.”

And just when you thought this was the ex­tent of Wil­son’s trou­bles, there are even more com­pli­ca­tions in her sit­u­a­tion.

Two months af­ter dis­cov­er­ing the tu­mour, a vis­it to a neu­rol­o­gist re­vealed that Wil­son al­so had two blood clots in her brain, re­ferred to as Cere­bral Ve­nous Si­nus Throm­bo­sis.

“What hap­pens when an au­toim­mune at­tack oc­curs is that it could af­fect your tis­sues, your or­gans, your blood ves­sels, de­pend­ing on which one it is. And what was hap­pen­ing is that my body was at­tack­ing the vein in my brain, so it caused clot­ting.”

Af­ter tri­al and er­ror with med­ica­tion, the clots were dis­solved. How­ev­er, deal­ing with all of these med­ical episodes has put Wil­son’s life on hold.

“I used to like go­ing on hikes. I can’t re­al­ly do that be­cause there’s a lot of joint pain. My goals, my per­son­al goals, they are all pushed aside. As I said, you know, I want­ed to at age 30, you have cer­tain things that you want to achieve. And, you know, I worked re­al­ly hard, and I saved every­thing, and I had to use it all out.”

She says one of the dif­fi­cul­ties of hav­ing an au­toim­mune dif­fer­en­tial di­ag­no­sis is its un­pre­dictabil­i­ty.

“The most dif­fi­cult part of au­toim­mune dis­eases is that you can­not pre­dict when you’re go­ing to have an episode. So I could be per­fect­ly fine to­day, and to­mor­row I am in sham­bles, my body would hurt, do all kind of weird stuff, and I can’t re­al­ly plan. So, to say that I have plans for next week, I can’t plan be­cause I don’t know how well I would feel,” she said.

“It al­so af­fects my abil­i­ty to be 100 per cent there, I can’t show up for peo­ple the way I would want to.”

With the bur­den of her med­ical com­pli­ca­tions, Wil­son’s month­ly salary bare­ly cov­ers her ex­pens­es.

“Af­ter pay­ing rent and my light bill and buy­ing gro­ceries and trans­port and all of that stuff. I al­so have loans to pay, and the mon­ey that I re­main with, it goes straight in­to health. So right now it’s, it’s pay cheque to pay cheque.”

But there is a light at the end of the tun­nel for her. Wil­son was ac­cept­ed for treat­ment by doc­tors at the Mayo Clin­ic in Jack­sonville, Flori­da.

“My doc­tor, he did a re­fer­ral to me to the Mayo Clin­ic. And usu­al­ly with these for­eign clin­ics, they ei­ther ac­cept you or they don’t. So, they ac­cept­ed me.”

Wil­son is set to make the trip in April, but fi­nances are a bit tight for her.

“The av­er­age es­ti­mat­ed cost that a pa­tient usu­al­ly spends is around 15,000 to 16,000 US. I have to get that mon­ey con­vert­ed in time to go over there.”

In or­der to ac­cess the treat­ment, Wil­son has to pay first.

She be­lieves the Mayo Clin­ic can give her the an­swers she has been search­ing for, grant­i­ng her a new lease on life. Through com­mu­ni­ca­tion with the clin­ic, Wil­son un­der­stands that most pa­tients stay about two weeks at the cen­tre while un­der­go­ing as many tests as pos­si­ble, to de­ter­mine a di­ag­no­sis.

She adds that there is a pos­si­bil­i­ty she may need to re­turn to the clin­ic af­ter the tests are done, based on the find­ings that can come out of all the test­ing.

De­spite all these tribu­la­tions, Wil­son’s faith re­mains strong and she is hope­ful that she will re­ceive the an­swers she has been look­ing for.

“I am a pray­ing per­son, and I have a lot of peo­ple around me who are pray­ing as well. And, it was pret­ty scary hav­ing two clots in my brain. And I think God is a mirac­u­lous God, and so if you save me once, you could do it again.

“It’s scary, it’s very scary to not know what is go­ing on with you and why you’re feel­ing this way. I think that I could live a nor­mal life once I get the help and the re­sources that I need.”

Now, she’s seek­ing the help of the pub­lic in any way they can con­tribute.

“I strong­ly be­lieve that no­body owes you any­thing in this life, right? And so, peo­ple, if peo­ple choose to sup­port, I am great­ly ap­pre­cia­tive of that, what­ev­er peo­ple can do. Not every­one can do­nate fi­nan­cial­ly, but some­times emo­tion­al­ly, they can sup­port, whether it’s a prayer or words of com­fort.”

All Wil­son hopes to achieve is to re­turn to a life of nor­mal­cy.

“It has changed me, be­cause, you know, be­ing a phar­ma­cist and then be­ing a pa­tient, it was two dif­fer­ent ex­pe­ri­ences. It makes you ap­pre­ci­ate life, and it makes you look at things from dif­fer­ent an­gles, but it’s def­i­nite­ly very hum­bling,” she said.

“And I hope to al­so help peo­ple who are in my shoes, you know, and if there’s any­body who is go­ing through the same thing that I am go­ing through, I hope to be some sort of aid for them. And in ad­di­tion to that, I hope to re­sume my nor­mal life, you know, go back to achiev­ing the goals that I want­ed to achieve.”

Any­one want­i­ng to as­sist Wil­son can call 391-2684. Do­na­tions can be made to Wil­son’s First Cit­i­zens bank Tu­na­puna ac­count #2549408.