These days, there seems to be a ‘day’ for everything – and today (28 February) is RARE DISEASES DAY.
Source: From ‘rare experiences’ with wild elephants in Hwange, Zimbabwe, to living with incurable, ‘rare diseases’ – The Zimbabwean 28.02.2017 by Sharon Pincott
Strange, you might think, for me to be posting about this, although many of you are likely to know someone with an incapacitating and perhaps deadly disease that our international medical community still knows relatively little about.
I never thought that I personally would go from ‘rare experiences with wild elephants in Africa’, to ‘living with rare diseases’.
I am, in fact, now a ‘rare diseases’ patient, living with incurable and unpredictable illness. My ills are not infectious (they’re not passed from person to person), but like many diseases they are debilitating and can potentially be life-threatening. And in this world of so many advances, they’re unbelievably difficult, time-consuming and frustrating, still today, to even diagnose in their early stages.
As it turns out, my main life-altering (for a while, life-shattering) affliction is Connective Tissue Disease, with core symptoms, right now, of Scleroderma; a rare, incurable, autoimmune disease which involves, among other things, skin tightening due to over-production of collagen, narrowing of blood vessels, inflammation and chronic pain. Rare (also incurable) Pulmonary Hypertension (a type of high blood pressure in lung/heart arteries, adversely associated with Scleroderma) has also raised its ugly head. Turns out too, I have Barrett’s Oesophagus (the pre-cursor to oesophagus cancer); another related ailment. Then there’s a few other strange things, still unexplained, thrown in for good measure. So much for rarely ever being unwell…
Looking back now, it’s fairly clear I’ve likely had various early, very mild, symptoms for quite some years; perhaps going back as far as 2004 (after the first land grabs of Presidential Elephant land in Hwange, and all of the nonsensical events that began around that time). More early symptoms, I realise now, surfaced around 2008 (after I accepted, and then declined, to work with elephants in Addo National Park in South Africa, believing initially that I needed to leave the crazy country of Zimbabwe, but then deciding to stay on.) Still more surfaced after yet another elephant – my favourite Presidential Elephant matriarch named Lady – disappeared for good in 2012. And then all hell began to break loose in my body after the strain of leaving the elephants and Zimbabwe altogether in 2014, and my subsequent return to Australia.
Research has not yet been extensive, but scientists believe there’s probably some genetic predisposition to Scleroderma, believing too that it’s also possibly linked to environmental factors (eg the likes of DDT), with severe stress events being one of the ‘triggers’. As a child, I grew up in a farming community in Australia where light planes (innocently) sprayed crops with the likes of DDT, prior to its ban when I was in my twenties. Zimbabwe, during my earlier years there (and who knows what really happens still today perhaps? – since what Zimbabwean officials say out loud, and what they actually approve, and do, are often two different things, as the wildlife world already knows well), legally used DDT extensively throughout the country for malaria control…. And nothing more needs to be said about endless stresses and strains when working closely with vulnerable elephants in a country like Zimbabwe, as is clear when reading ‘Elephant Dawn’; the story of my 13 years (2001-2014) with the Presidential Elephants in Hwange.
The theme for today’s RARE DISEASES DAY is ‘research’: “WITH RESEARCH, POSSIBILITIES ARE LIMITLESS”.
So, today, I hope you’ll join with me in advocating for more world research into rare debilitating diseases that affect people you know, and perhaps even yourself directly. They are often silent killers, with patients who don’t necessarily always look like they have a serious, incurable, illness. After more than a year of living with doctors, specialists and hospitals, it’s early days since finally learning more about what is wrong with me. And the survival statistics for these various combined diseases are definitely not happy reading. So often we’re unsuspecting of our underlying fragilities… What I’ll realistically be able to do next overseas, and for how long, is once again unclear, although I do hope to still be able to spend time with elephants in South Africa soon. Some of my ailments (eg the searing skin tightening, constant pins and needles in feet, additional areas of pain and severe fatigue) have only recently surfaced in full force, and are worsening more quickly now, at least currently. It’s not possible to know how this will all ultimately pan out.
This sort of thing prompts you to look back on your life, and wonder if you made the right choices, took the right paths. And I know that I’m incredibly fortunate to have lived life the way I really wanted to; 13 years on the ground assisting one of the most extraordinary species on earth. I believe that paths presented to us in life are predestined. And I feel confident that I chose the right ones. As a kind friend wrote to me recently: “you’ve filled that unforgiving minute to the fullest”. Who knows whether or not these rare diseases would have ‘triggered’ to the extent they have, had I chosen to leave Zimbabwe earlier, and moved elsewhere in Africa. Regardless, I have no regrets.
The human and rhino tragedies last week at Thula Thula in South Africa (home of the late ‘Elephant Whisperer’ Lawrence Anthony, and his wife Francoise) highlight what many of those working hard to make a difference for endangered and threatened species face daily. The unethical and the despicable surely can’t be allowed to win this war.
Today seems like a good day for reflection, and if it turns out to be time for a life-change, don’t leave it too long. You just never know what’s around the next bend in the road. No matter what it involves, go ahead and do it now, rather than saving it for later. As famed author Erma Bombeck wrote before her death, reflecting back on her life: “I would have burned the pink candle sculpted like a rose, before it melted in storage…”
Originally posted by Sharon Pincott on www.facebook.com/ElephantDawn