In April this year, Amara Campbell wrote a about her experience with Lyme disease and her battle to have it recognised.
This is Amara’s story…
By AMARA CAMPBELL
I have been sick my whole adult life. First taunted by a ridiculously inadequately named condition known as Chronic Fatigue Syndrome (CFS) and later by Lyme Disease and Co-infections.
Infections that, ironically, ‘do not’ exist here in Australia. Yet they do clearly, and positive tests confirmed what are primarily clinically diagnosed illnesses.
Out of nowhere I had my controversial (although widely accepted worldwide) treatment pulled from me, thanks to a governing body who purports to protect patient care and yet without warning they cut my life line. I was left adrift and dangerously ill. Without treatment within days, less than a week I had regressed so dramatically I was and am worse than I have ever been. My symptoms have flared dramatically and I live daily in a world of torture.
Daily I struggle with everything from tics, Tourette’s, seizures, convulsions, chemical allergies, excruciating bone and muscle pain, dislocated joints, loss of vision, vomiting migraines, inability to walk, loss of motor function, dementia symptoms, neurally mediated hypotension, thermodysregulation, dystonia, cataplexy, bronchial spasms, asthma and so many more symptoms to list them would take up your day. The ultimate result being that were I living with HIV or cancer and in this condition, anyone who denied me medical treatment would be abhorred for their horrific and inappropriate behaviour. It would be all over the news, the media, you would read it everywhere. Instead no one listening. Can you even imagine that this is your Australia?
My last option was a peripheral intravenous central catheter to provide me with saline and multi-vitamins to boost my immune system and at least give me a chance to fight this infection load. With a suppressed immune system and no way to fight, and no treatment. This was my last shot.
Then it failed. It was a shock to the radiologist. The first time in fifteen years apparently. He tried four times. All the main veins that lead to my heart are clogged, because my low blood volume means my blood is thick and I throw off clots.
So I let myself fall down, I’m still only on one knee… but I am not going anywhere. I will fight on for me, for my community, for awareness and for you, so you never suffer as I have.
With another dear friend I run a charity called Change for ME Australia Inc, we work to provide practical support to patients who are sick like us. Lee my co-founder is also gravely ill. So we walk (or try to) the walk. And we want for others not to have to experience what we have. Unfortunately for us illness has prevented us achieving as much as we would have liked, but I still believe in a better future for my Changers. We won’t give up.
Amara is co-founder of the charity Change for ME Australia Inc with one of her best friends Lee who is also gravely ill with complex chronic conditions.
Amara is severely disabled with multiple conditions. She first diagnosed with Myalgic Encephalomyelitis (otherwise referred to in Australia as ME/CFS) in 2001. Without the funding to be able to fully explore nor treat her illness properly, Amara’s immune system was dramatically battered and due to years of prolonged chronic illness she has developed numerous co-infections and comordities. Amara has Lyme Disease, Babesia, Weil’s Disease, indicators of Sarcoidosis, Barmah Forest Virus,Neurally Mediated Hypotension (NMH), Dysautonomia, IBS, Multiple Chemical Sensitivity (MCS), Fibromyalgia, Endometriosis, Polycystic Ovarian Syndrome (PCOS), Asthma, Bronchial Spasms, Tics, Tourette’s, Dystonia, Cyclical Vomiting Syndrome, Seizures, Cataplexy, Thermodysregulation and numerous other complications that interfere with her life and make every day complicated and challenging.
Currently her sister Marnie, a presenter on TVSN is working to raise money for Amara’s treatment through The Amara Campbell Foundation.
To follow Amara’s journey you can find her videos on youtube at Aid4Amara.