World Lupus Day
“It’s not lupus, it’s never lupus” House M.D. fans are aware of the catchphrase of eponymous Dr.House in the hit FOX series show House M.D. As much as they have out ruled the disease in so many patients, throughout 3 seasons, finally the 8th episode of season 4 highlighted the disease as they diagnose Systemic lupus erythmatosis in a magician. This article however is not about the synopsis of the show but the attention being given to the disease.
Systemic lupus erythmatosis is by far one the most under recognized disease. It is chronic inflammatory disease. It occurs when the body’s own defense mechanism attacks its own tissues and organs. It can involve kidneys, heart, brain, blood cells, joints and lungs.
Lupus appears to be more common in women and people aged between 10 and 15. It can be caused as a side effect of some medicine or in genetically predisposed people. Environment can also play as a risk factor.
The wide range of symptoms that lupus presents with are the main cause of it’s under recognition. They are confusing for even the best of doctors and lead to wrong diagnosis. Another reason is that no two cases of lupus are similar. Every individual presents with a different combination of signs and symptoms.
The diagnosis of lupus depends upon the stage of disease. It develops slowly. Patient with mild disease experience flares. The symptoms get worse or sometimes disappear for a while. Symptoms involve multiple systems and so appear as random. They include:
- Fatigue and fever
- Head ache, memory loss and confusion
- Joint pain, stiffness and swelling
- Butterfly-shaped rash on the face that covers the cheeks and bridge of the nose
- Skin lesions that appear or worsen with sun exposure (photosensitivity)
- Fingers and toes that turn white or blue when exposed to cold or during stressful periods (Raynaud’s phenomenon)
- Shortness of breath
- Chest pain
- Dry eyes
The butterfly rash is the distinctive and helpful feature in diagnosing the disease in an otherwise difficult to diagnose case.
Just as the symptoms are grave and difficult to diagnose, the prognosis of the disease is not bright either. Lupus is neither preventable nor completely curable. However the symptoms can be cured and the organ damage can be slowed down by medicines. Immunosuppressant, corticosteroids, anti malarial drugs and acetaminophens are used. The patients have to visit their doctor on regular basis to change the dose and frequency of the medicines as their disease progresses.
Even though this disease can and does kill there are survivors and people who are still battling this disease.
To raise awareness of the disease 13 countries including USA, Canada and UK, collaborated in UK in 2004 and observe world lupus day on May 10th each year. Every passing year more countries join hand in observing lupus day.
The world lupus day proclamation is to call for action for governments around the world to increase their funds for lupus research, awareness and patient services. They aim to raise lupus as a world health issue need the government and private sectors to raise funds for educational programs for health professionals.
According to the official lupus website of foundation of America, 5million people suffer from this debilitating disease worldwide. Many people remain misdiagnosed, undiagnosed or die without knowing at all.
The world lupus community is using social media to spread awareness. Lupus day is also a ‘put on purple day’. All supporters across the world will wear purple shirts with world lupus day logo. Supporters are requested to wear purple proudly and spread awareness about the disease. The logo can be downloaded here. They have further come up with balloons and badges for this day. The logo can be downloaded here: http://www.lupus-sle.org/world-lupus-day—may-10.html
The awareness campaign is not only restricted to t shirts and balloons but people are encouraged to share their experience with any lupus patient and survivors.
Lupus foundation Australia is holding a luncheon at Caribbean bar to increase awareness and raise funds for the research of the disease.
Hibbs lupus trust UK has organized a world lupus Day walk. Their plan is to walk five miles with all the supporters who can join the walk to Cannon Chase a beautiful landscape. People cannot join can still take part by organizing their own virtual walk.
There is also a ‘wigs of love’ program where a donor can grow their hair up to 30 cm and donate it for lupus and other cancer patients who have lost their hair to the disease to make wigs.
The least that can be done for these patients through the lupus organization is donating in form of cash, property or vehicle.
Lupus day is supported by many celebrities; few of them who lost a dear one to this disease. Julian Lennon, a musician and philanthropist, has been devoted to raise funds for Lupus foundation of America since 2011.
He is the global ambassador of for the Lupus foundation of America. He lost a close friend to lupus. Other celebrities who are also involved to support Lupus are Daniel Radcliff (Harry Potter), Ian Harding, Lady Gaga, Mercedes Scalba, Natalie Morales, Tomiko and Jessica Mauboy just to name a few.