VAPING BRINGS RELIEF (and much more) TO BRAVE SOUTH AFRICAN WITH RARE DISEASE

Vape_December_2015_WEB_160Photo by Philip van Wyk, Johan’s nephew: Although wheelchair bound as a result of two strokes related to his debilitating syndrome, this brave former IT guy, who contracted the disease at 26, is at least now free of the painful ulcers that can make even swallowing water a trial.

The ongoing conflict between vaping and smoking notwithstanding, both habits often are unfairly demonized by the general public, due to a popular misconception that it is the nicotine in tobacco and e liquid that poses the greatest threat to health. This ogre status is largely due to a combination of ignorance and inaccurate, overhyped media reporting, because while excessive use of the stimulant alkaloid may contribute to cardiovascular disease—it is neither carcinogenic, nor nearly as harmful as numerous other “hidden” contents of cigarettes.

In fact, it will come as a surprise to many to discover that—apart from being a major aid in smoking cessation—nicotine is now being evaluated as an effective therapy to treat a number of neurological disorders, including Alzheimer’s, Parkinson’s, Tourette’s, sleep apnea—and even attention deficit disorder (ADD).

Another disease where the efficacy of nicotine has been proven is Behcet’s disease. Sometimes called Behcet’s syndrome, Morbus Behcet or Silk Road disease, this poorly understood and often misdiagnosed affliction, named after Turkish dermatologist Hulusi Behcet, is an incurable auto immune disorder that affects blood vessels throughout the body. Symptoms include oral and genital ulcers, ocular inflammation and problems with the gastrointestinal tract, as well as pulmonary, musculoskeletal, cardiovascular and neurological symptoms, as well as impaired hearing and vision (https://en.wikipedia.org/wiki/Beh%C3%A7et%27s_disease).

Most prevalent in the eastern Mediterranean, Middle East and East Asia (along the ancient Silk Road), Behcet’s is extremely rare in Western countries, affecting fewer than 20,000 individuals (one in 170,000) in the United States. In South Africa, there only are eight known cases. One of these is feisty, 40 year old computer technician Johan van Niekerk, who is wheelchair bound, with a paralyzed left side and deteriorating eyesight.

Johan is supported by a disability grant and lives with his elderly mother in the small mining village of Allanridge, in the Freestate Province. Apart from being an ardent campaigner to increase knowledge about the disease and offer support for fellow sufferers, he is a committed vaper.

This excerpt from Johan’s website (http://behcets.co.za/wp/) eloquently relates his story:“In 2001 I was hospitalized. Diagnosed with meningitis, encephalitis and four strokes later the revised opinion and correct diagnosis was Behcets.

At the time I was the only diagnosed case of Behcets in South Africa, I had a lot of questions, no answers and no support. Six months earlier I was healthy, fit, working and carefree. All of a sudden I was out of work, in a wheelchair and very alone and very frightened. In a very short time Behcets had robbed me of the life I knew.

I spent ages scouring the Internet for more information and support. In July 2010 I attended the International Behcets Conference in London, where I met many other Behcets sufferers and the wonderful and brilliant people who spend their life treating and fighting the disease.

I returned with knowledge, advice, support and HOPE! I was no longer alone or frightened. I was on a mission…”

One of the most significant discoveries Johan made on his journey toward a better quality of life was the beneficial effect of nicotine.

He said, “I’d smoked cigarettes since I was 16 because it was ‘cool,’ and when I was diagnosed at 26, I moved over to a pipe as a cheaper option. At the time, I wasn’t bothered by the chronic flare up of ulcers that plague others with Behcet’s. Then, I decided to stop smoking for health reasons, and discovered that, two days later, I could hardly eat due to the sores in my mouth and throat. It was a Catch 22 kind of thing: smoke and be able to eat, or have healthy lungs and not eat. On the worst day with the ulcers, I could barely swallow water, so I started smoking again out of frustration, and they disappeared. I searched the Internet and found that nicotine, combined with saliva, keeps the ulcers at bay, so many people smoke to alleviate the symptoms of BD.”

I asked Johan how he transitioned from smoking to vaping. “In 2010, during the World Behcet’s Conference, I stayed with a non smoking friend, so I bought my first cigalike and put up with that for my time there. But when I came back, I started smoking again, because the ulcers kept recurring, due to insufficient nicotine getting to where it was supposed to be. Then, about a year and a half ago, I was browsing YouTube and saw a

story continues below…

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…continued from above

To the ppl that had a hand in helping me onto this road. To see the doctor smile when you go for your check up and you tell her you stopped smoking, when you are able to enjoy a meal without the excruciating pain of the ulcers, to smell the cookies your mom is baking or the rice she is burning. I salute you, you will never know how thankful I am, and this truly is a gift that keeps on giving and for that I thank you from the bottom of my heart.

-KIMBO


clip of this guy blowing vapor like a steam train. A quick Google search informed me that the humble e cigarette had evolved into a much more potent nicotine delivery system, so I decided to give the new, improved product a go. I did some research, bought an eGo Twist from eBay and joined Ecigssa (http://www.ecigssa.co.za/), the South African e cigarette forum.”

It was on the forum, several months ago, that I first encountered “Kimbo” (Johan’s avatar, relating to the coffee lover’s favorite Italian espresso brand). I was immediately struck by this brave, fellow newbie’s humorous and unashamed approach to his dilemma. Here was a man, incapacitated and marooned in a tiny town, who—while clearly averse to “playing the disability card”—was desperately in need of help, as you will see from an early post:

“So I killed the piggy bank and ordered an eGo Twist from eBay; now I am just saving to get a tank, but being on a disability grant the budget is very low and saving might take a while.

Then the juice … I have no idea where to start. No one is giving out samples so that a potential customer can try, get hooked and buy again and again?

Again being on a grant does not allow testing and going to meets is kinda out for me, apart that I am in the middle of the Freestate I am in a wheelchair, so yea kinda screwed lol. If someone can give me some advice, or know where i can get some samples please help me. Thank you.”

Little could “Kimbo” have imagined the impact of this humble request upon forum members. Shortly thereafter, a package was delivered to his home. In it was a comprehensive starter kit containing various e liquids, and, best of all, six months later, a Reo Grand mod, all sponsored by anonymous Ecigssa donors, who had generously rallied to an overwhelmed Johan’s aid.

After one week, Johan became a full fledged vaper. He has now been without “stinkies” for well over a year, and remains entirely ulcer free, thanks to his Reo Grand (with Cyclone) and Hcigar VT 40 with a sub tank mini.

A regular, upbeat and inspiring contributor to the Ecigssa forum, Johan has the following message for readers: “I believe life does not stand still. You can’t sit in a corner and expect what you did not work for. If you have BD and smoke to get rid of the ulcers like I used to, try vaping—it might work as well for you as it does for me. Overall, I just feel better. I was a heavy smoker for the best part of 20 years, and I could not believe how easy it was to switch over. To the people at Ecigssa, thank you for your assistance, help and trust; I could not have done this without you.”

For more information on Behcet’s, visit the American Behçet’s Disease Association (ABDA) at http://behcets.info/tips_info.htm or http://www.niams.nih.gov/Health_Info/Behcets_Disease/behcets_disease_ff.asp

Cape Town, South Africa based Maggie Follet is an awardwinning writer and founding member of the South African Scriptwriters’ Association Cape Chapter. Her freelance career has enabled her to constantly reinvent herself, broadening her horizons as a scriptwriter, journalist, proofreader and Afrikaans translator. Follow her Facebook group, Vape Escape Mzansi.

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