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Irene Kilumanga

Personal Profile

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#LupusWarrior&Advocate

Founder of LupusTZ and active member of Lupus UK

She’s a Survivor, she has been battling with this chronic & life threatening illness since she was diagnosed with Systemic Lupus Erythematosus in 2007, critically ill both kidneys were badly inflamed.

She is an inspiration to many who have given up, she talks & use her own living testimony, encouraging all who are suffering with this illness never to give up assuring them that they can FIGHT & survive, taking the medication & have a normal lifespan.

She usually attends meetings/conference & the monthly #LupusSupport Group when in the UK.

Her Christian Faith & love of Almighty God continues to see her through.

Since her diagnosis in 2007 & being in hospital for 3 months even when she was discharged she has been in & out of hospital. Up until now as the nature of this illness is that it can go in remission & anything can trigger it, she has flare ups & ends up in hospital, she takes a lot of medication which has side effects due to long term use & caused other multiple diagnoses 1 particular named Prednisolone which has affected her bones.

But She has always had a tremendous support & motivation to cope with her SLE from her two beloved children MR. LOUIS JOEL NYERERE & MISS. LEXIE ROSE NYERERE who Never miss to go with her on the major events, especially her favourite is on WORLD LUPUS DAY 4 miles Sponsored Walk organised by the LupusUK, & if you go that extra mile (5 miles) you get a certificate, she always makes sure she attends with her children & friends always join her to raise awareness & raise money for the charity. On her bad days her children Louis & Lexie always encourage her to get up & do exercise.

 

When she got married her husband Ambassador Chabaka Kilumanga also joined the crew & is on her side with her two beloved children Louis & Lexie, her parents & close friends.

 

She’s was determined to raise Awareness especially in Tanzania where it’s badly needed. not many people know about this terrible illness & few who suffer from it have been diagnosed out of the country, those who couldn’t travel their blood samples are taken & sent to India or South Africa & they wait for the results which can take up to two weeks.

She had a first press conference in TZ in 2018 held at their home alongside her husband Amb. Chabaka Kilumanga, Mr. & Mrs. Leslie Mambo, Rtd. Judge Mihayo & his wife, & Miss. Constancia Lima to speak about this terrible illness which cause it’s still unknown Scientists are still doing research.

She also arranged a meeting with lupus patient at her home for a chat, nibbles & drinks, because with her own experience she found that these support group meetings do help because you meet different people you talk & you might be very down to the point of giving up, with body, joints & muscle pains (amongst others) & listening to others you find that you are not the only one, & maybe another person is even worse than what you are going through so through her own experience battling with this #lupus she wanted to start something in Tanzania & help others

 

Irene was ever so pleased that on the 28th February 2021 on the RARE DISEASES DAY LupusTZ was invited & was give the 2nd row to sit at the Dar-Es- Salaam Serena Hotel as she’s was in the UK for hospital checkups & treatment then the whole country went into the national lockdown due to the coronavirus outbreak, attended with other #LupusPatients & Advocates Sharifa Kibola, , Hajrrath Mohammed, Elizabeth Achilles, & Atutunga attended.

For the 1st time The Vice President of the United Republic of Tanzania H.E. Mrs. Samia Suluhu Hassan spoke about #Lupus & said that for the 1st time she was told that there was a disease called lupus & in total in the whole of Tanzania there are 150 patients & that she did not know what lupus was, so she wanted the specialists to explain it to her.

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