I would like to take a minute of your time to share a story with you that really touched my heart. I had the privilege of meeting a lady named Susan van der Walt about 3 years ago. Susan has a disease called Lupus. As with most of us, she had never heard of Lupus before. Since then I have learned much about Lupus and would like to share this with you. The Lupus Purple Ribbon:
What is Lupus? Lupus is an autoimmune disease and causes the body's immune system to become hyperactive. The immune system then turns and attacks the body’s normal, healthy tissue and organs. This results in symptoms such as muscle inflammation and cramping, swelling around the body and face, damage to joints and arthritis, skin rash, kidney diseases and failure, blood clotting, pericarditis around the heart and pleurisy of the lungs to mention a few. Under normal function, the immune system makes proteins called antibodies in order to protect and fight against *antigens such as viruses and bacteria. Lupus makes the immune system unable to differentiate between antigens and healthy tissue. This leads the immune system to direct antibodies against the healthy tissue - not just antigens - causing swelling, pain, and tissue damage. (* An antigen is a substance capable of inducing a specific immune response.) The Lupus Purple Ribbon:
What are the symptoms of lupus?
Since no two cases of lupus are exactly alike, there is a wide range of symptoms that are known to affect many parts of the body. Sometimes symptoms develop slowly or appear suddenly; they can be mild, severe, temporary, or permanent. Most people with lupus experience symptoms in only a few organs, but more serious cases can lead to problems with kidneys, the heart, the lungs, blood, or the nervous system.
Lupus episodes (or ‘flares’) are usually noted when certain symptoms become worse. Examples of symptoms:
Achy joints (arthralgia), arthritis, and swollen joints (especially in wrists), small joints of the hands, elbows, knees and ankles.
Swelling of the hands and feet due to kidney problems.
Fever of more than 100 degrees F (38 degrees C).
Prolonged or extreme fatigue.
Skin lesions or rashes - especially on the arms, hands, face, neck and back.
Butterfly-shaped rash (malar rash) across the cheeks and nose.
Anemia (oxygen carrying deficiency of red blood cells).
Pain in the chest during deep breathing or shortness of breath.
Sun or light sensitivity (photosensitivity).
Hair loss or alopecia.
Abnormal blood clotting problems.
Raynaud's phenomenon: fingers turn white and/or blue or red in the cold.
Seizures.
Mouth or nose ulcers.
Weight loss or gain.
Dry eyes.
Easy bruising.
Anxiety, depression, headaches, and memory loss.
Lupus can also lead to complications in several areas of the body - these include:
Kidneys - serious kidney damage is a primary cause of death for lupus sufferers.
Central nervous system - lupus can cause headaches, dizziness, memory problems, seizures, and behavioural changes.
Blood and vessels - lupus causes an increased risk of anaemia, bleeding, blood clotting, and vessel inflammation
Lungs - non-infectious pneumonia and difficulty breathing due to inflammation of the chest cavity are more likely with lupus
Heart - heart muscle and artery inflammation are more likely with the disease, and lupus increases the chances of cardiovascular disease and heart attacks.
Infection - lupus treatments tend to depress the immune system making your body more vulnerable to infection.
Cancer - lupus increases the risk of cancer, especially of non-Hodgkin's lymphoma, lung cancer, and liver cancer
Bone tissue death - a lower blood supply to bone tissue leads to tiny breaks and eventual death of bone. This is most common in the hip bone.
Pregnancy - lupus increases the risk of miscarriage, hypertension during pregnancy, and preterm birth.
Approximately 80% of children born from Lupus Sufferers inherit Lupus.
This is a short summary of the illness. You can learn more about Lupus on the internet. There are so many things to be learned, and people need to be educated about Lupus. I would like to share with you a letter that her husband (Nicco van der Walt) wrote about Lupus on behalf of his wife (Susan van der Walt) who suffers from Lupus. Life with Lupus Hi, my name is Nicco van der Walt and my wife, Susan (or Suzie), has Systemic Lupus (SLE). Before Lupus, Suzie was the most energetic, hardworking woman I have ever met. She is what one would call an ‘over-achiever’ in so many ways. Susan loves people tremendously and have always gone out of her way to help people through counseling, financial support, ministry or whatever the request may be (even though she runs two businesses and a ministry simultaneously). When people were in dire straits she would allow them to stay in our home until they were back on their feet. She always keeps her phone on and close to her in case someone in need calls at any hour of the morning. Today life is very different for my wife. Suzie was diagnosed with having Systemic Lupus in 1997 after being rushed to hospital where they found blood clots in her lungs. At first we had no clue what Lupus was and have been to many doctors all prescribing different drugs from cortisone to malaria tablets which only caused her to bloat up like a balloon and loose the strength of her eye sight. She has even had chemotherapy with all the known side effects, but to no avail. Although Suzie has suffered from joint aches and muscle spasms all the time, the effects of Lupus has gradually become more severe with the disease attacking her kidneys, liver, brain and causing skin rash to mention a few. At times she would shiver and shake like a leaf, then faint from pain. I use to wake her up immediately in fear of a stroke or something similar, but I’ve learnt to let her sleep through it so she could rest and escape from the pain for those few minutes. Her muscles tend to spasm most when trying to relax in bed and it’s a huge effort just trying to turn in bed because of the pain, not to mention getting up in the morning and trying to get dressed whilst waiting for the muscles to warm up, often having to crawl to the loo. Currently, the effect of Lupus has caused infection described as Internal Shingles. This is one of the most intensely painful diseases known. I think the most confusing thing to most people is the fact that one cannot easily tell when a person is a Lupus sufferer as they may look fine on the outside, yet has much internal pain and discomfort. There are times when the effects are less intense and Suzie may feel periods of relief, but it is only in anticipation of what the next flair-up may be. Even so, Suzie still pursues her life to the greatest extent possible. We may not be able to do all the things we have always desired, but we have become so close and I have realised what an amazing example as a giving and loving person she is without expecting anything in return. One thing that I have personally learned to appreciate is my health. We have no Idea how fortunate we are to shower or bath without our joints in pain or spasms - just to be able to drive wherever we need to go and to work our jobs. I thank God for who He is, and will always believe He will make a cure, or heal my wife. FDA Approves New Lupus Drug By John Gever, Senior Editor, MedPage Today Published: March 09, 2011 The FDA has approved belimumab (Benlysta) for reducing disease activity in systemic lupus erythematosus (SLE), making it the first new lupus drug in more than 50 years. Belimumab is a monoclonal antibody targeting the B-lymphocyte stimulator protein, called BLyS. It was co-developed by Human Genome Sciences and GlaxoSmithKline, which jointly applied for FDA approval. The recommended dosing schedule is 10 mg/kg by IV infusion every two weeks for the first three doses, followed by a four-week interval indefinitely thereafter. The specific indication is to reduce disease activity in patients with active, autoantibody-positive lupus who are also receiving standard therapy. Currently the condition is treated with corticosteroids and antimalarial drugs; immunosuppressants, rituximab (Rituxan), and cyclophosphamide are sometimes prescribed off-label. The last drugs to be approved specifically for lupus were hydroxychloroquine and corticosteroids, in 1955, the FDA said. In November, an FDA advisory committee voted 13-2 to recommend belimumab's approval, even as panel members acknowledged that the drug was only modestly beneficial. A clinical study showed that belimumab was significantly more effective than placebo in one-year response rates, but only a minority of patients receiving the drug met the study's criteria for a response after one year (43% with 10 mg/kg belimumab, 32% with placebo). This was the best news ever ! For it being so, the treatment is only available in America. We therefore need financial assistance to enable administering Benlysta to Susan in America.
The cost involved for Susan to travel to America and obtain this treatment is R300 000-00. This includes travelling and medication costs to return and have Benlysta administered monthly for a 12 month period. What this means for
other South Africans with Lupus is that Susan can assist in registering Benlysta in South Africa. Susan has already conducted Lupus Awareness campaigns to ensure that Benlysta is recognised and ultimately registered in South Africa sooner than having to wait years in anticipation which will be too late for many Lupus suffers. According to the usual procedure, it will take three years before the drug is officially available on the South African market. Susan, and so many others, do not have three years to wait. Susan will need 12 treatments a year, for her to live life near normal. As described above, the cost involved in the process of admitting the treatment to Susan is very high. For this reason we need your help and support to make this miracle possible for her. We hereby ask for your financial support – any amount of donations will be highly appreciated. Please make deposits into the following bank account: Acc Name: Eagles Flight Ministries Bank: FNB Acc No: 62118507097 Branch Code: 250655 Budget
