Personal message

Ernestine Deane is a well loved South African songstress who in 2020 suffered recurrent and severe shingles over the brain area. This led to complications that included encephalitis and myxedema.

 

She was bedridden for more than 6 months and saw various doctors who could offer no answers or treatments that worked.

 

A BackaBuddy campaign was created in 2021, which enabled Ernestine to see a thyroid specialist who confirmed that the infections were symptomatic of underlying autoimmune illness. He diagnosed advanced stage autoimmune thyroiditis (Hashimotos) and Cushing's syndrome.

 

Ernestine has since made steady progress on the functional medicine treatment protocol. This includes holistic autoimmune treatments, organ support treatments, regular blood reviews and specialist consultations, SCIO therapy, body work, autoimmune/ antiviral eating plan, medicines, vitamin injections, mineral and nutritional supplements.

 

However, the treatment plan is expensive and not supported by her medical insurance which covers hospital emergencies only. She has not been able to consistently sustain the treatments that maintain her recovery.

 

Ernestine has improved enough to make a much welcomed return to the stage in 2023. This has impacted her adrenal energy, paradoxically triggering relapses of autoimmune flare ups and shingles in the last 3 months. 

 

In a recent radio interview with Cape Talk for her opening performance at the MELCUSA SICK Pride, she shared:

I have been feeling so hungry for the stage again. Performing is very different for me now. There is this layer of being in a tender process of healing which wasn't there before. Autoimmune illness is largely an invisible illness. I'm out of the life threatening danger zone, so you wouldn't know that it was there if you looked at me. My spirit is strong yet my physical vitality is not the same. Memory is still healing and there are still unpredictable bouts of immobility, pain and hyper inflammation. I have to be very good at advocating for my needs while I grow my stamina. Practical things like resting before and after gigs to manage the fatigue and reserve my energy. Making sure there's a chair on stage, or having transport arranged because I no longer drive.

This experience has added more depth to my cultural work, my compositions and performance. I am grateful to be alive and also very aware that long standing chronic illness can take as long to heal. If I thought I had patience before, I have had to dig even deeper within my soul and live with even more trust and humility. In this way, I have surrendered to Illness as my teacher. I have had to learn to ask for the support I need and to accept the help- to receive and not just give. That's been one of the hardest lessons for me. To rest and learn to receive. I have no doubt that I will make a full recovery into remission, however long it takes.

 

Ernestine needs our support so that she can continue to perform and recover with the peace of mind that she can resume and maintain consistency with her treatments, without financial anxiety.

Donations