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Sabrina's Story

West Coast

I have had various autoimmune diseases (where the body mistakenly attacks itself) since I was 12, and most recently was diagnosed with Myasthenia Gravis (MG) in 2013. Post-diagnosis it became clear that the disease began five years earlier in 2008.

MG is a rare chronic autoimmune neuromuscular disease characterized by weakness of the body’s voluntary muscles. Although it can affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and swallowing are most frequently affected. The onset can be sudden and symptoms often are not immediately recognized as MG.

In most cases, the first symptom is weakness of the eye muscles or difficulty in swallowing. The degree of muscle weakness varies greatly, ranging from a localized form (limited to eye muscles), to a severe generalized form (in which many muscles are affected). Symptoms, which vary in type and severity, include drooping eyelids, blurred or double vision, unstable gait, a change in facial expression, difficulty in swallowing, shortness of breath, impaired speech, and weakness of the limbs and neck.

MG is caused by a transmission defect of nerve impulses to muscles. It occurs when communication between the nerve and muscle is interrupted at the neuromuscular junction—where nerve cells connect with the muscles they control. Normally when impulses travel down the nerve, the nerve endings release a neurotransmitter called acetylcholine receptors. In MG antibodies produced by the immune system block, alter, or destroy the receptors, which prevents muscle contractions from occurring.

For this reason I receive a blood product treatment called intravenous immune globulin (an antibody infusion derived from plasma donations), which temporarily modifies the immune system by displacing the body’s own malfunctioning antibodies with normally functioning donated antibodies.

A near myasthenic crisis (where muscles that control breathing weaken to the point where ventilation is inadequate) resulted in Emergency Department admission, a two-week hospital stay, and my very first antibody infusions.

I had previously trialled pyridostigmine (a drug to aid neuromuscular transmission), and soon after received a thymectomy (the surgical removal of the thymus gland via a sternotomy) – neither of which helped. Since then I had been prescribed ongoing immunosuppressive steroid treatment. However the long-term or high dosage use of steroids has major side effects. Due to this, my symptoms and my age (29 at the time), regular monthly antibody infusions began in late 2014 (accompanied by a lower steroid dose). MG severely affects what I am capable of and antibody infusions significantly increase my life quality. Most importantly this magical treatment enables me to work (I am a wildlife biologist specialising in endangered bird species), an integral component of living a fulfilling existence. Antibody infusions have changed my life and I literally refer to them as “the juice of life”.

If you are currently not a plasma or blood donor, please consider it. Plasma is like "liquid gold" and there is currently a real need for more plasma donors in New Zealand. Your donations don't just save lives; they also significantly improve the life quality of many chronically and terminally ill patients. You can make a real difference! Thank you to all who donate, I am eternally grateful.