It's in great desperation that I write today having exhausted all other avenues. I apologise for the very detailed letter but wanted to provide as much information as I can for you to make a decision. It will also consist of timelines and a little history.
For those that know her personally, would know that she is not one to quit! Her work and family always took the forefront. She always assisted anyone in need, even at her worse times, bending over backwards with whatever means and ways she could and she always got stuff done no matter what odds were stacked against her! Born to a single, illiterate mother in a poverty stricken home, just after her teenage years she decided to explore other options of making a better life. She relocated to Johannesburg from Durban. With having not many qualifications, she started as a data capturer and after 3 months was promoted to an export freight clerk. Shipping became her passion but life always dealt her a difficult hand of cards. In 2012, she spent months in hospital, had 6 lumber punctures in a space of 3 months but no conclusive results. They eventually diagnosed her with encephalitis, meningitis and pseudo seizures. She fought, got back on her feet and started her career again.
In 2015, she stopped walking completely, on admission; she was diagnosed with DVT and possibly lupus. But due to not having one conclusive test for lupus and no family history of same, that was ruled out. Again, she continued her life as normal. Lived each day as a normal person.....as normal as you would get.
May 2017, she developed little pimples on her hands which were very itchy and painful. On visiting a GP, he advised it was chilblain ( winter sores ). By the end of August, it spread to her toes, face and ears so she we went back to the doctor. He immediately sent her to hospital for further testing.
August 2017, consulted with the specialist, he advised that it was a severe case of Vasculitis. He admitted her
for a 1 day treatment of chemo therapy as her cells were very active. He asked her to return in 2 weeks whilst he completed testing bloods. But by this time, she wasn't even able to depend on herself, be it bathing, eating, etc.
September 2017, on her follow up, she was advised that she has Lupus SLE ( can affect the joints, skin, kidneys, blood cells, brain, heart and lungs. Symptoms vary but can include fatigue, joint pain, rash and fever. These can periodically get worse (flare up) and then improve. Vasculitis ( Vasculitis can cause vessel walls to thicken and narrow, cutting off vital blood supply to tissues and organs.Symptoms include fever, fatigue, weight loss and muscle and joint pain. Antiphospholipid syndrome (Antiphospholipid syndrome can cause blood clots to form within the arteries, veins and organs. Symptoms may include blood clots, which may occur in the legs, arms or lungs.
He said it was very aggressive, killing blood vessels and the only way to treat it was aggressive chemo therapy. Again she was admitted for 14 sessions. Whilst she was in hospital, Dr advised that she has Panniculitis (Panniculitis is a group of diseases whose hallmark is inflammation of subcutaneous adipose tissue (the fatty layer under the skin - panniculus adiposus). Symptoms include tender skin nodules, and systemic signs such as weight loss and fatigue. ), this eats your fatty tissue, muscle and cells. It started eating into the tissue and muscle on her right arm and both sides of her behind. This is a picture of her arm but the other I obtained from the net as I could not put one of her ( only hers in on both sides )November 2017, she began having what looked like seizures. She was rushed to hospital and we were further advised that vasculitis spread to her brain giving her cerebral vasculitis (or central nervous system
vasculitis (sometimes the word angiitis is used instead of "vasculitis"), vasculitis (inflammation of the blood vessel wall) involving the brain and occasionally the spinal cord ), psychosis (may occur as a result of a
psychiatric illness such as schizophrenia. In other instances, it may be caused by a health condition, medication or
Possible symptoms include delusions, hallucinations, talking incoherently and agitation. The person with the condition usually isn't aware of his or her behaviour ) and an excessive bleeding condition, where they did an emergency balloon endometrial ablation ( A thermal balloon endometrial ablation is an operation that uses a special balloon filled with hot water to remove the lining of your uterus (womb) Normally one looks forward to being discharged from hospital, but in her case, it was one of the hardest things I saw. The pain she experienced made me feel helpless. She spent almost 2 months in hospital being discharged a few days before Christmas. After discharge, she tried being normal again, which I know affected her a lot due to losing her hair, eyebrows, etc. Still, she had a smile on her face and anyone that did not know her, thought she had the best life as she went back to her usual ways of always looking out for others and their concerns rather than her wellbeing. I must admit that she would portray this strong woman that can take on anything. She never allows her kids to see her pain and she is never one to complain or mention what's going on with her internally.
January 2018, she was known as 'our speed queen'. That's her nature. But by this time, she became very drained, problems with walking, breathing and most important her memory. She would speak to you but a few minutes later, does not recall anything. She became very drained and couldn't manage the smallest of tasks. She was once again sent her to hospital for immediate admission. Just as one thinks nothing else can go wrong, she was taken to see an Ophthalmologist due to severe headaches and bad vision. With this test, it was confirmed that she now has stage 2 Macular degeneration (Macular degeneration causes loss in the centre of the field of vision. In dry macular degeneration, the centre of the retina deteriorates. With wet macular degeneration, leaky blood vessels grow under the retina. ), that’s one step away from losing complete sight ( stage 3 is complete loss of vision). To confirm this, she was sent to Donald Gordon Medical Centre for an eye
angiogram. That test was positive as well and the main cause is the use of plasmoquine-the medication which is used to treat her severe lupus. Whilst receiving treatment, her veins collapsed and unfortunately she requires treatment on IV. They were forced to then insert a permanent port ( A port is a small disc made of plastic or metal that sits just under the skin. A soft thin tube called a catheter connects the port to a large vein. Your chemotherapy medicines are given through a special needle that fits right into the port. ) She also had a kidney biopsy (is a procedure that involves taking a small piece of kidney tissue for examination with a microscope). These lengthy hospital stays were taking its toll by now, we didn’t know what to expect next. The more we thought she is getting better, new illnesses / conditions were discovered. She was later discharged and asked to self-medicate herself, hoping all will go well.May 2018 - she suffered with extreme stomach pain / cramps and problems with walking. Once again she was admitted because she also had a flare up. As if she has not been through enough already, they found that she
has 2 ovarian cysts ( A solid or fluid-filled sac or pocket (cyst) within or on the surface of an ovary ) measuring 4 x 2.8cm each. She then had an MRI of her hips and spine which also confirmed same. But it also confirmed that she has facet joint hypertrophy (is a condition in which the facet joints of the spine become enlarged. Facet joints are cartilage-encased hinges that hold adjacent vertebrae together) on her L3 / L4 and S1. She also has narrowing of the neural foramen. Due to her age and complications, she was discharged with medication, hoping it will help, if not she will need a spinal infusion ( is a surgical procedure used to correct problems with the small bones in the spine (vertebrae). It is essentially a "welding" process. The basic idea is to fuse together two or more vertebrae so that they heal into a single, solid bone )
July 2018 - she was not able to walk. She had excessive pain with yet another flare up.
August 2018 - she was admitted to hospital. They needed to treat her flare up but also find out why she was unable to walk. The Rheumatologist called an Orthopaedic surgeon. He requested to see the MRI that was done in May. On viewing it, he pointed out to “black lines”. These black lines meant she had no blood circulation in her hips thus stating she has avascular necrosis (The death of bone tissue due to a lack of blood supply. Avascular necrosis is associated with long-term steroid use and drinking too much alcohol. It's most
common in people between the ages of 30 and 60 and often affects the hip. Early stages may be symptom-free.
Eventually, the affected joint may hurt when weight is put on it or when lying down. Treatment includes physiotherapy, surgery and medication ). However he alone could not diagnose this and needed confirmation from the Radiologist, he also wanted a reason this was missed in May. A few hours later it was confirmed, something we all did not prepare ourselves for. She needs an urgent bilateral hip replacement. At this moment, with her conditions, there is a success rate of 73% to 85%. The doctors advised that they unfortunately could not stop any steroids due to the lupus being so active and aggressive. After replacement on her left side, she will definitely be due for replacement on her right side.
October 2018, she went back to the Orthopaedic surgeon and he advised that the pain does not only come from her hips, she has sciatica and piriformis syndrome and bone degeneration (Piriformis syndrome is a disorder of a narrow muscle located in the buttocks. Symptoms include pain, tingling or numbness in the buttocks and down the leg, which may worsen after sitting for a long time, climbing stairs, walking or running. )
I write this because my sister has 2 kids and will move mountains for them. A few months before she was diagnosed, they purchased their first home. This was her biggest accomplishment, coming from a poverty stricken family. She always said that the house will be her kid’s stability and stepping stone but this has now been handed over to attorneys for non-payment / notice of set down. My sister was the higher income earner
that sustained the family / household. She last earned a salary in December 2017. She has not been able to work since, making it very difficult. Having just one low income, they became distressed resulting in both their
vehicles being repossessed by the bank. This makes it so difficult as public transport is not an option in her case.
They sold almost all their items at home to make ends meet but this has come to an end as there is nothing more to sell. Further to that, her husband fell ill and was taken to hospital. Psychologically, this has a huge impact on him. He thinks he is losing everything; especially his wife and he became suicidal. He is also in and out of hospital.
I on the other hand moved up to Johannesburg to help my sister after her diagnosis. We are only 2 siblings and I
am not financially stable to assist her. I know that this is too long an email to read amidst your busy schedule
and I thank you for taking the time to do so. I am sure you are probably asking yourself, how does she need help ( if you have not figured it out yet ). Unfortunately my sister has no life cover, insurances or anything to fall back on. Whilst it seems that saving their home or getting a vehicle is the most important thing right now, I know that this would take some sort of divine intervention. I am pleading for any assistance for this family, be it groceries, medical bills, anything that will alleviate some stress / pressure of them. I know and understand that the economy is in crisis but I know that humanity still exists, hence I humbly ask for any assistance.
I pray that you will be touched to forward this letter on to any organisation or charity for any assistance they
may be able to offer or if you can help in whatever way. Especially with your prayers as she needs a miracle right now- I know they will be eternally grateful and appreciate any help they can get.
I can't imagine myself going through half of what she's been through and I take my hat off to her. Should you require any further information or assistance, please feel free to contact me.