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Lupus victims mark their day with call for help

By Eijah Khisa

Parliament has been challenged to ensure that it advocates for policy formulation towards addressing the medical condition of people suffering from Lupus which is a strange little known disease in the country that continues taking innocent lives with impunity.

The call has been made by the country director of the Purple Butterfly Uganda Nantume Peninah Namirembe during the celebrations of the 12th   World Lupus day which was held at the Movit industrial area in Kampala.

The event brought together over 100 participants including patient warriors drawn from across the country who spoke out about their silent suffering and urged the government to take action by addressing the challenges which bring about this burden before it wiped out many people whom it is supposed to protect.

The little known disease is an inflammatory disease caused when the immune system attacks its own tissues. and organs which can affect the joints, skin, kidneys, blood cells, brain, heart and lungs and its symptoms vary but can include fatigue, joint pain, rash and fever.

Namirembe said her body had managed to organize the local event and  it was  the country’s  maiden day celebrations for this condition.

She observed that herself a warrior patient of Lupus and currently working with the Buganda Kingdom BBS Tv as Lambula program host appealed to 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.   

The Nakawa East Member of parliament Eng. Balimwezo Ronald was chief guest who  also launched the Purple Butterfly Uganda Foundation which the warrior members shall use as a vehicle for advocacy and also lobby for support from stakeholders like parliament, ministry of health and the development partners among others as well as fight stigma and community marginalization.

Eng Balimwezo during his speech pledged to engage parliament about this strange and unique medical condition such that the August house can debate and cause 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.

‘Am 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 legal action in building capacity of the patents 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 thus patients ending up spending a lot of money yet it is purely a medical condition which can be handled among 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 these drugs for the patient community given that current cost of drugs for treatment of the burden is very high as a patient must consume tablets worth 10,000/= per day   

How to handle the burden?

While there’s no cure for lupus, current treatments focus 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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