By Kitts D. Mabonga
HEALTH
Uganda commemorated the 12th World Lupus Day alongside the rest of the world, with the warriors urging parliament to support the efforts in raising awareness campaigns to educate the public about the impact of lupus on communities.
During the event held at the Movit conference hall in the industrial area, Peninah Nantume Namirembe, the country director of Purple Butterfly Uganda, made the call.
The celebration was graced by Eng. Ronald Balimwezo, the Member of Parliament for Nakawa East, who also launched the Purple Butterfly Uganda Foundation.
This foundation will serve as a platform for advocacy and seeking support from stakeholders such as parliament, the Ministry of Health, development partners, and others.
The foundations primary objectives are to combat stigma, marginalization, and provide support to those affected by lupus.
The high-profile event attracted more than 100 guests, including warriors from all over the country, who shared their personal stories about their challenging journey with this relatively little known medical condition.
Lupus is an inflammatory disease where the immune system mistakenly attacks its own tissues and organs. It can affect various parts of the body, including the joints, skin, kidneys, blood cells, brain, heart, and lungs. Symptoms may vary, but commonly include fatigue, joint pain, rash, and fever.
Namirembe told the legislator and audience how Uganda was marking its maiden day celebrations for this condition.
She highlighted the silent toll that lupus takes on countless lives due to the lack of public awareness campaigns and access to medication.
As a worrier patient and media personality working with one of the popular a local TV stations in the country, Namirembe re-echoed the need for parliament to support them by way of providing both technical and logistical support such that the public and the general medical professionals can appreciate the condition.
Balimwezo pledged to engage parliament about the strange and unique medical condition such that it can be deliberated on for action in supporting the victims by way of building their capacity to spread the message to wider communities and find medical treatment solutions to the patients.
“I’m shocked to learn about this Lupus condition for the first time today as well as having listened to the tearful testimonies from some of the patients, am making my promise that am going to engage parliament about this problem such that the house can debate and take appropriate action in building capacity of the patients as well as looking into the legal gymnastics of the burden,” noted Balimwezo.
He observed that many legislators and medical professionals in the country are not aware of this condition or they may take it lightly yet its impact on the population is horrible as well as being counterproductive to the economic development agenda of the country.
He lamented how unfortunately many people ignorantly refer to this condition as a problem of witchcraft and patients end up spending a lot of money yet it is purely a medical condition which can be handled in hospitals.
He pledged how he would engage parliament to come up with legislation promoting research on the condition for purposes of ensuring that the national medical stores [NMS] is legally compelled to procure the required drugs for the patients given that that current cost of drugs for treatment of the burden is very high as a patient must consume tablets worth 10,000/= daily
How to handle the burden?
While there’s no cure for lupus, current treatments focuses on improving quality of life through controlling symptoms and minimizing flare-ups.
This begins with lifestyle modifications, including sun protection and diet. Further disease management includes medication such as anti-inflammatories and steroids.
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