Help needed for my sister – Unknown Disease

I am sure most of us can agree that life sometimes just happens. We have the best intentions and we make plans, we make backup plans and we even make back up plans for our backup plans.

However, it doesn't matter how much we bargain and have faith sometimes life just deals you a card that’s completely out of your control and which you can just not handle alone.

Sadly, my adored eldest sister now finds herself in this scenario and as a self-confessed, “control freak” and fiercely independent woman, this situation is driving her insane. She has been fighting for her life the last three months, battling with a rare complicated disease which still baffles medical specialists.

Ilze made the brave decision in 2005 to go on a bold adventure and move to Dubai, where she was able to work, further her studies, gain global experience, embrace diversity in meeting people from around the globe and eventually decided to follow her dreams and live her passion of making a bigger difference and helping others reach their potential by opening a business in 2007 which specialize in Senior Leadership and Corporate Coach development. She was blessed to marry an amazing man and they now have a most adorable little 3-year-old girl.

Ilze is the definition of resilience – which is the capability of a strained body to recover after deformation caused especially by compressive stress; also an ability to recover from or adjust easily to misfortune or change.At 2 years old she was diagnosed with juvenile rheumatoid arthritis.When she was 13 she became terribly ill and after months of causing her doctors severe perplexity in identifying her disorders and conditions, she was diagnosed with the following autoimmune diseases, lupus erythematosus (SLE), Thrombocytopenia (low blood platelet count) and Rheumatoid arthritis.She lived with the pain, stress, embarrassment and exclusion as a teenager with an agile and positive mindset.

In 2005 after many years of various treatments and hard work mentally, emotionally and physically her disease went into remission.Until now, where unfortunately and literally her whole life changed drastically overnight on 16 April 2019, when she began a terrible death-defying journey.

She felt quite fatigued on the 15th and after a meeting went to bed where she got fever, sever body aches and started to vomit and had a runny tummy.She thought it must be tummy flu and a rheumatoid flare up and that she will go to the Doctor the next day.Thank goodness her toddler woke her up about an hour earlier than usual or she would have been dead today.Her little one asked her why she has blue spots on her face and Ilze realized that she probably also has a Thrombocytopenia flare up too and that she urgently need to get to a hospital.That's’ when the craziness started to happen – on arrival at ER her pulse was 128 per minute and her blood pressure almost non-existent at 64/46 mmHg.Besides her complaints of joint ache and diarrhea she had non-blanchable purpuric rash all over her body and face, giving a leathery appearance and feel.

She was admitted to the Intensive Care Unit (ICU) where she was resuscitated with IV fluids, which didn't improve her blood pressure, after 48 hours and various different treatments her blood pressure started improving and vasopressors were titrated accordingly.

She then spent 30 days of hell being critical in ICU and she was finally diagnosed with:

1. Septic Shock

2. Multi-organ failure

3. Purpura fulminans

4. Streptococcus pneumonia with DIC

5. Acute kidney injury with severe metabolic acidosis 6. Rhabdomyolysis 7. Right leg DVT 8. Infected wounds (pseudomonas) 9. Acute SLE, Rheumatoid and Thrombocytopenia flare up, aggravated due to a spelnectomy I childhood secondary to ITP> (A full report, pictures and test results are available on request)

During this trying time she only had her husband for support until he flew out their mothers a week later.Words can’t express the trauma and stress he incurred.

She was treated by more than 8 specialists in Dubai in various fields who went out of their way to ensure that she receives the possible treatment and authentic care and they have made the time to ensure that her husband understands everything that she’s going through even though they gave her a 20 – 30% chance of survival.

She was in severe pain, not allowed to be touched, she was delirious and unaware of her surroundings for more than a week.She had one episode of generalized tonic clonic seizure the EEG showed abnormal left frontal spike wave activity.She had regular fever spikes, she had gangrenous toes and other deep wounds on her face, arms and legs with blackish discoloration, the impression was sepsis-induced Purpura with hemorrhagic infarctions of skin and dermal vascular thrombosis, she had ulcers in various parts of her body including her stomach and mouth, her blood became sticky and she developed thrombosis in her right leg, the list of ailments goes on and on.

It was a huge milestone and celebration when she was finally transferred to the general ward on 15/05/2019.She could barely move her arms and had to learn to walk again whilst suffering from tremendous pain due to the deep wounds on her feet and legs.She has been discharged on 23/05/2019 and is constantly being monitored and has to go to the hospital at least every second day as an outpatient.

Even though her medical aid has been amazing with approvals as an in-patient where her bill came to more than AED 500 000, which we are forever grateful for.

Their house looks like a medium sized pharmacy; she has started receiving Rituximab infusions, which is a cancer treatment, and immune suppressant, which she needs to receive every 6 months as well as cortisone injections in her knees and coccyx. She still has to under go skin grafting plastic surgery and also sadly they are likely to amputate her small toe. Her road to recovery is going to be an extremely long one and her list of medical expenses are and will become almost longer than the great wall of china.

As mentioned Ilze is self-employed and has been informed by her doctors that she won’t be allowed to work for at least the next 3 – 6 months leaving her with no earnings for that time. Both Ilze & her husband was completely against the idea of crowd funding, however they realized that in order for her to recover and them to remain in Dubai and not be prosecuted due to unpaid expenses they have to put their pride in their pockets and ask for help.Due to the nature of Ilze’s illness and the amount of care involved she can not leave Dubai, she also won’t get medical cover anywhere else if she had to leave the country.

So far as an out-patient the costs of transport, additional medical payments for consultation, treatments not covered by her medical aid such as wound/scar treatments, psychiatric treatment and medicine has forced the Mulders to start using their savings to cover these costs which will be depleted soon.Ilze has been classified as “temporarily disabled” for the next 6-12 months.As an entrepreneur every day of her not working is a day of not generating an income.As expats in Dubai, they are reliant on two incomes a month.Ilze had confirmed work in China and Dubai during May and June which would have contributed significantly to massive expenses such having her visa and trade license renewed, office rental, home rental, school fees, bus fees, bills etc. however she spend her time fighting for her life in hospital instead.

We have set a goal of R400 000 that we would like to raise for her medical and other crucial expenses so that she can focus on getting healthy and making sure that she thrives from day to day so that she can cherish, love and be with her little girl, husband, family and friends for many years to come.

We would like to acknowledge EVERYONE at Welfare Mediclinic, Dubai for the exceptional care and superb service all around without this Ilze would have probably not been with us today.

Even if you can’t contribute but you know Ilze, it would mean a lot if you could comment here and share how you feel about her and perhaps what influence she had on your life as we know that she will need to read and hear positive things when post-traumatic stress and depression truly kicks in.

If you are able to help her in anyway we would be forever grateful. In return you are welcome to reach out to Ilze to provide you with virtual coaching at no cost, once she is more coherent and capable to have quality conversations.It’s with much compassion and loves in my heart that I say thank you!

Ilze is tackling this with absolute optimising and a Growth Mindset, hoping that this traumatic experience will enable her to give back to others in a truly meaningful way in the future.