Fay­ola K J Fras­er

At 18 years old, most teenagers are think­ing about uni­ver­si­ty, friend­ships, and the ex­cit­ing jour­ney in­to adult­hood. For Shiv­ali Ram­bachan, how­ev­er, life took a dras­tic and un­prece­dent­ed de­tour.

A pre-med uni­ver­si­ty stu­dent from Trinidad study­ing in the Unit­ed States, Ram­bachan is at present liv­ing with a rare and ag­gres­sive au­toim­mune dis­ease known as AN­CA Vas­culi­tis, specif­i­cal­ly, Gran­u­lo­mato­sis with Polyangi­itis (GPA), for­mer­ly known as We­gen­er’s gran­u­lo­mato­sis.

This con­di­tion caus­es the body’s im­mune sys­tem to mis­tak­en­ly at­tack blood ves­sels, lead­ing to in­flam­ma­tion and dam­age in or­gans, pri­mar­i­ly the lungs, up­per res­pi­ra­to­ry tract, and kid­neys.

For Ram­bachan, how­ev­er, the dis­ease af­fects near­ly every ma­jor sys­tem in her body, in­clud­ing her lungs, kid­neys, up­per res­pi­ra­to­ry tract, skin, ner­vous sys­tem, GI tract, and more.

Ram­bachan’s jour­ney with this ill­ness be­gan at age 17 when her health start­ed de­clin­ing with­out a clear ex­pla­na­tion. “I had to be hos­pi­talised of­ten,” she re­calls. “There were many bad test re­sults, but no an­swers.”

In Feb­ru­ary 2024, her symp­toms took a dras­tic turn when she be­gan ex­pe­ri­enc­ing a pul­monary haem­or­rhage, cough­ing up large amounts of blood and strug­gling to breathe. “That was when I knew this wasn’t just a flu or in­fec­tion. This had to be some­thing far more se­ri­ous.”

Her symp­toms of GPA were re­lent­less and dis­turb­ing—cough­ing, vom­it­ing and uri­nat­ing blood, nose­bleeds, eye bleeds, rash­es, fevers, and in­tense mus­cle and joint pain, to name just a few.

De­spite fre­quent hos­pi­tal­i­sa­tions and wors­en­ing symp­toms, it took months for Ram­bachan to re­ceive a prop­er di­ag­no­sis, and she re­mem­bers it be­ing “in­cred­i­bly hard”. Along with her moth­er, Suzanne, and the help of her fam­i­ly, she made the dif­fi­cult de­ci­sion to leave Trinidad and seek spe­cialised care in the US, hop­ing to get a di­ag­no­sis.

Fi­nal­ly, on June 25, 2024, the di­ag­no­sis came: AN­CA Vas­culi­tis. “Half of me was re­lieved af­ter months of not be­ing be­lieved and not get­ting help; it was great to get val­i­dat­ed and of­fi­cial­ly know the name of the dis­ease that was try­ing to kill me,” she re­calls.

She had an an­swer. But the oth­er half of her was dev­as­tat­ed, as at 17 years old, she felt as though she had just start­ed liv­ing, and her life had been turned up­side down by a dead­ly and pow­er­ful dis­ease.

Vas­culi­tis is rare, es­pe­cial­ly in young peo­ple, and Ram­bachan’s mul­ti-or­gan in­volve­ment makes her case even more un­usu­al. Liv­ing with a rare dis­ease al­so comes with emo­tion­al iso­la­tion. “I don’t know any­one else in Trinidad with Vas­culi­tis,” she says. 

But through the Vas­culi­tis Foun­da­tion and the “In­spire” app, she has found an on­line com­mu­ni­ty called “Vas­culi­tis Voic­es” where she is able to com­mu­ni­cate with oth­er Vas­culi­tis pa­tients. These con­nec­tions of­fered both com­fort and harsh re­al­i­ties.

“It’s in­spir­ing and em­pow­er­ing to com­mu­ni­cate with Vas­culi­tis pa­tients, but it’s al­so trou­bling to know how bad­ly they are suf­fer­ing and how many ex­pe­ri­ences we all share. Es­pe­cial­ly in the realm of health­care, many of us have faced a lot of dis­crim­i­na­tion and scruti­ny, have had doc­tors not be­liev­ing us, not giv­ing us prop­er treat­ment, mak­ing us feel like we aren’t “sick enough”.

There is cur­rent­ly no cure for Vas­culi­tis. Treat­ment fo­cus­es on man­ag­ing symp­toms and sup­press­ing the im­mune sys­tem to pre­vent it from at­tack­ing the body. For Ram­bachan, this has meant en­dur­ing pow­er­ful steroids, chemother­a­py, im­muno­sup­pres­sants, bi­o­log­ics, and plas­ma ex­changes. These treat­ments bring their own risks, as se­vere im­muno­sup­pres­sion leaves her vul­ner­a­ble to in­fec­tions, and the side ef­fects of the treat­ments can be dan­ger­ous and gru­elling, es­pe­cial­ly in a young fe­male. Still, she takes every pre­cau­tion she can, in­clud­ing wear­ing a mask and avoid­ing crowds.

De­spite the phys­i­cal toll, Ram­bachan re­mains men­tal­ly and emo­tion­al­ly re­silient. Her faith plays a cen­tral role in her strength. “I pray every sin­gle day,” she says, “I be­lieve that God gave me this dis­ease be­cause He knows I’m strong enough to han­dle it.” In­spired by her own ex­pe­ri­ence, she is now pur­su­ing her dreams of be­com­ing a rheuma­tol­o­gist to help pa­tients like her­self. “I have a unique per­spec­tive, and I want to use it to sup­port oth­ers who feel un­heard or dis­missed.”

Some of her dark­est mo­ments in­clud­ed bat­tling sep­sis sev­en times and be­ing re­sus­ci­tat­ed three times. Along­side heart com­pli­ca­tions, hy­per­ten­sion, and anaemia, Ram­bachan of­ten feels fa­tigued and is con­stant­ly in pain. But none of this stops her from em­brac­ing life’s joys. “My dis­ease will nev­er con­trol me, and it will nev­er win,” she says con­fi­dent­ly and tries to cre­ate as much nor­mal­cy in her life as pos­si­ble. She finds strength in the small things, such as do­ing her dai­ly make-up rou­tine, get­ting her nails done, cook­ing, bak­ing, cre­at­ing dig­i­tal art and play­ing with her dog Scar­lett. “My dog is my hap­py place,” she says. “She keeps me go­ing strong.”

De­spite the con­stant chal­lenges, Ram­bachan is thriv­ing aca­d­e­m­i­cal­ly and emo­tion­al­ly. Her uni­ver­si­ty has been sup­port­ive, and she con­tin­ues to pur­sue her ed­u­ca­tion with de­ter­mi­na­tion.

She urges oth­ers bat­tling chron­ic ill­ness to keep push­ing for­ward. “These dis­eases can be very iso­lat­ing, but you are not alone. What you feel is re­al. Be a war­rior for your­self and de­feat your dis­ease.”

Shiv­ali Ram­bachan is more than just a pa­tient—she is a fight­er, an as­pir­ing heal­er, and a voice for those who of­ten go un­heard. Her sto­ry is one of re­silience, courage, and a fierce de­ter­mi­na­tion to not just sur­vive but to live bold­ly.

“I am a Vas­culi­tis war­rior,” she says with qui­et strength, and her words echo a pow­er­ful truth: that even in the face of a re­lent­less dis­ease, hope and pur­pose can still thrive.

Her fam­i­ly wants oth­ers to un­der­stand the re­al­i­ty of liv­ing with a rare dis­ease, not just for the pa­tient but for their loved ones, too.

While this jour­ney has been over­whelm­ing, they want to share that with the right sup­port you can find the strength to face each day. They hope that by shar­ing Ram­bachan’s ex­pe­ri­ence, more aware­ness will be brought to the strug­gles fam­i­lies face when deal­ing with rare ill­ness­es, and how vi­tal com­pas­sion, com­mu­ni­ty, and un­der­stand­ing are in mak­ing it through.