Living with lupus

Family and friends joined lupus survivors to raise public awareness about the disease.

20 May 2019 | Health

Talaesindano Nangolo; Lupus survivor; Many who suffer from this cannot afford to take all the tests.

Walvis Bay - Karl Philander

Community members staged a march on World Lupus Day commemorated on Friday 10 May to raise public awareness about the disease in Walvis Bay.

Three lupus survivors Jada Uiras, Leila Muxinga and Talaesindano Nangolo, led the walk chanting and waving posters, supported by relatives and friends, through the streets of the harbour town.

The aim of the exercise organised by Jessica Swartbooi was to draw people’s attention to the not so very well-known disease.

The group assembled at the municipality after the march and had a panel discussion about the disease.

Swaartbooi explained that lupus, or Systemic Lupus Erythematosus (SLE), is a long-term autoimmune disease in which the body’s immune system becomes hyperactive and attacks normal, healthy tissue.

“Symptoms vary from person to person and may be experienced in a series of waves. Many do not realise they are suffering from lupus and regard the symptoms as a common sicknesses.”

She said diagnosing lupus can be quite challenging.

“There isn’t just one test that can give doctors a yes or no answer. Sometimes it can take months or even years before doctors have all the information needed to make a lupus diagnosis. You will not be able to tell you have lupus without professional assistance. Some of us have been under-diagnosed and misdiagnosed for a long time while some were misdiagnosed for years.”

She listed chest pains when taking deep breaths, fatigue, fever with no actual cause, general discomfort, hair loss, weight loss, mouth sores, sensitivity to sunlight, skin rashes, more specifically what is called the ‘butterfly’ rash, as some of the common symptoms.

Talaesindano Nangolo shared her experience as a lupus sufferer, saying she was misdiagnosed for many years.

“I had so many symptoms and lost count. It was only last year that I got diagnosed with SLE, after many years.”

She also elaborated on the impact the disease had on her personal life.

“As a hard worker, the biggest challenge I faced was the reduction it brought along in my effectiveness and productivity due to fatigue, muscle and joint pain I experienced especially in my lower limbs. I was only able to sit or stand for a short period when carrying out tasks. Standing for a prolonged time resulted in me having to deal with lower back pain.”

Nangolo added that having one’s own immune system fight against you instead of protecting you could affect a person mentally and emotionally.

“No one wants to be chronically sick for years.”

She said due to the many tests that need to be done people who suffer from this disease are experiencing many challenges.

“Many who suffer from this cannot afford to take all the tests. The risk of being underdiagnosed or misdiagnosed is very high. It is difficult for doctors to pinpoint that the sufferer has the disease.”

She appealed to the corporate sector and well-doers to assist with funding tests and the treatment of lupus sufferers.

According to the Lupus Foundation of America 5 million people around the world are affected by the disease and 16 000 new cases of lupus are reported each year.


Facts about lupus

Lupus is not contagious. You cannot “catch” lupus from someone or “give” lupus to someone.

Lupus is not like or related to cancer. Some treatments for lupus may, however, include immunosuppressant drugs that are also used in chemotherapy.

Lupus is not like or related to HIV (Human Immune Deficiency Virus) or AIDS (Acquired Immune Deficiency Syndrome). In HIV or AIDS the immune system is underactive and in lupus the immune system is overactive.

Lupus can range from mild to life-threatening and should always be treated by a doctor. With good medical care, most people with lupus can lead a full life.

Similar News


Unique partnership benefits hospital

2 months ago - 16 June 2019 | Health

Swakopmund - Otis Finck Steckels Toyota resolved to partner with and address a number of maintenance issues at the Swakopmund State Hospital. Rene...

Focus on menstrual health

2 months ago - 09 June 2019 | Health

Swakopmund - Adolf KaureMenstrual Hygiene Day was commemorated for a second time in the country at the Swakopmund Secondary School hall recently. Information to assist...

Tackling hepatitis E

3 months ago - 20 May 2019 | Health

Service at clinic deplorable

4 months ago - 15 April 2019 | Health

The current clinic in Narraville resembles a two-bedroom house and it urgently needs to be expanded, residents informed Walvis Bay council members during a discussion...

Tackling the hepatitis E outbreak

4 months ago - 08 April 2019 | Health

Walvis Bay - Otis Finck The ongoing outbreak of hepatitis E in several parts of the country prompted a proactive approach by the...

NSIF continues to invest in Namibia

4 months ago - 29 March 2019 | Health

The Namport Social Investment Fund (NSIF) last year responded to the plight of expectant mothers in and around Usakos by commissioning the construction of a...

Hepatitis E hits harbour town

5 months ago - 18 March 2019 | Health

The municipality of Walvis Bay called on residents not to panic in the wake of a reported hepatitis E outbreak in the coastal town. More...

Children with cancer to benefit from Spray-a-Thon

5 months ago - 11 March 2019 | Health

Adolf Kaure - The countrywide Cancer Association of Namibia (CAN) Spray-a-Thon commenced at the coast recently.The CAN Erongo office stationed volunteers at the Platz Am...

WHO supports fight against hepatitis E

5 months ago - 04 March 2019 | Health

SUBBED BY MINETTE Otis Finck - The World Health Organisation (WHO) will provide assistance to community members of the DRC settlement in Swakopmund...

Parkrun growing in strides

6 months ago - 18 February 2019 | Health

Otis Finck - The weekly free 5 km timed Walvis Bay parkrun celebrated its first year anniversary recently. It was also the 48th...

Latest News

Raak liries oor 'Suidwes'

5 days ago - 19 August 2019 | Supplements

Die vyftiental Suid-Afrikaanse ­musikante wat die verhoog gaan deel by hierdie jaar se Hentiesfees, sluit onder andere die sangeres Jezelle, bekend vir haar liedjie “Suidwes”,...

Henties Bay is where /Honeb's...

5 days ago - 19 August 2019 | Supplements

There is much more to Henties Bay than it simply being known as fishing haven, holiday resort and a retirement village, says the mayor of...


5 days ago - 19 August 2019 | Supplements

Vrydag 23 Augustus 2019 09:00 Hekke open ...


5 days ago - 19 August 2019 | Supplements

Many fishing trawlers have sunk off the Henties Bay coast, but very few wrecks are still ­visible today because of the onslaught of the elements....

'Jive' saam met Jo

5 days ago - 19 August 2019 | Supplements

Jo Nichol (38) is 'n man van vele talente. Hy tree nie net as musikant en seremoniemeester by vanjaar se Hentiesfees op nie, maar sorg...

Lus vir iets Anders?

5 days ago - 19 August 2019 | Supplements

Wynand en Lindi Delport het aan die einde van 2007 in die huwelik getree en die jaar daarna saam begin musiek maak as die duo...

Vaughn vier saam Hentiesfees

5 days ago - 19 August 2019 | Supplements

Die Namibiese sanger, kitaarspeler en liedjieskrywer Vaughn Ahrens is geen vreemdeling by die Hentiesfees nie. Vanjaar sluit twee nuwe gesigte by hom op die verhoog...


5 days ago - 19 August 2019 | Supplements

Besoekers aan vanjaar se Hentiesfees wat nog nie 'n draai by Die Galg gemaak het nie, kan gerus gaan kyk. Die Galg is berug oor...

Mini-reünie op Hentiesbaai

5 days ago - 19 August 2019 | Supplements

Caroline Grace sal by vanjaar se Hentiesfees weer eens die verhoog met Fatman deel - nes hulle gemaak het in die finale ronde van The...

Load More