Book Review and Interview: Joshua and the Shadow of Death

A couple of months ago, I was asked to write a book review on the first novel in the Berserker Series called Joshua and the Shadow of Death by author Gary McPherson. Unlike most of the literature that I spotlight and/or review on this blog page, which generally consists of a combination of published medical research, chronic illness self-help books, and occasionally other forms of scientific or non-fiction-type writing, Joshua and the Shadow of Death is a fictional thriller that is premised on resolving the mystery behind the suicide of Harold’s adoptive father, Richard Brown, as written from the perspective of the family’s psychiatrist and personal friend, Joshua Zeev. In cohorts with Dr. Zeev to resolve the remaining questions left behind in the wake of Mr. Brown’s tragic death, a significant portion of the story-line of this book centers on Harold’s (or Harry as Dr. Zeev calls him) mental health and controlling the symptoms of a rare, hereditary psychological disorder known as Berserker Rage Syndrome or Blind Rage Syndrome.

The chief symptoms of Berserker Rage include “sudden, impulsive, uncharacteristic violence” in which “the usually nonviolent, peaceable patient savagely assaults others (often strangers); experiences amnesia during episodes of ‘blind rage’; angrily overreacts to an actual external stimulus toward which the rage is directed; episodically exhibits extraordinary physical strength and relative immunity to injury; and is, by definition, not under the influence of drugs or alcohol, brain damaged, nor suffering from other major mental illnesses” (Diamong, 1996, p. 167-168). This exhibition of both violent and aggressive behavior amid those affected with Berserker Syndrome, however, theoretically results from the presence of monoamine oxidase A (MAOA) genetic variants – some of which have traced back to the historically debated “Berserker Vikings,” a legendary and “sinister brotherhood of warriors” originating from Scandinavia that were perceived social outcasts because they burgeoned “on the border between life and death, fueled by war and distinguished by the ecstatic battle fury” while stuck in trance-like state (Hjardar, 2018, para. 2). Interestingly enough, my own genetic testing affirmed that I also have what is called “The Warrior Gene,” which is extremely fitting considering the amount anger, rage, and frustration I have personally experienced not only in learning to live with multiple rare medical conditions, but also in learning how to deal with the difficulties in communicating my own pain and symptoms to friends, family, and the medical community as a whole.

At this point in time, the American Psychiatric Association has yet to formally categorize the constellation of symptoms associated with Berserker Rage Syndrome as its own entity in the Diagnostic and Statistical Manual of Mental Disorders (DSM) outside of the more general psychiatric diagnosis of Intermittent Explosive Disorder (IED), which is a type of “impulse control disorder marked by problems controlling emotions and behaviors, and result in behaviors that violate social norms and the rights of others” (Coccaro, 2018, para. 1). However, Berserker Rage Syndrome is still clinically perceived as a legitimate psychiatric condition by many mental health experts, who argue the difference between the two conditions is that Berserker’s includes the genetic predisposition towards violent and aggressive behavior and thus programmed into the nervous systems of Berserker patients via explicit heredity patterns as demonstrated in a multitude of other physiological and psychological behaviors and disorders throughout human evolution. Accordingly, one of the primary challenges in unravelling the conspiracy behind Mr. Brown’s suicide concerns Harold’s ability to not only overcome the overwhelming sense of grief and loss over the death of his adoptive father (and, later, his mother), but also learning how to deal with the functional limitations of a mental health condition that’s no fault of his own in order to have the strength uncover the surprising and truths hiding just beneath the surface of consciousness in this novel.

In addition to being given an opportunity to both read and review this book, however, I was also provided the privilege of interviewing the author of Joshua and the Shadow of Death, Gary McPherson, to converse about his own experiences in living and working with a chronic rare condition called Behcet’s Disease (along with some other chronic comorbidities) as well. For those of you who aren’t familiar with Behcet’s, this syndrome is best described as “a rare, chronic, autoimmune, autoinflammatory disorder of unknown origin. Its manifestations are thought to be caused by vasculitis resulting in damage to blood vessels throughout the body” (American Behcet’s Disease Association, 2014, para. 1). The principal symptoms presenting in this condition include the onset of flu-like symptoms, painful round or oval sores on the mouth and/or genitals, acne-like sores and pus-filled lesions on the skin, nodule development on the front-side of the legs, eye inflammation or blurred vision, vasculitis or thrombophlebitis in both the small and large veins, central nervous system dysfunction, and joint pain, swelling, or redness just to name a few (Genetic and Rare Diseases Information Center, 2018). Although Behcet’s is clearly a physiological disorder in nature – as opposed to Berserker’s Rage Syndrome, which is a psychiatric condition – there is still a definitive connection between the author’s personal history both in being adopted and later receiving a diagnosis of a relatively rare genetic disease and the character development of Harold. As with most things in life, we all know there is often some hidden truth laying buried within the fiction and the line used to separate physiological and psychological ailments is vividly fine at best. Nonetheless, here are McPherson’s answers to my interview questions pertaining to how this devastatingly rare, genetic disorder impacted his life and work – both leading up to and following diagnosis.

In the press release released by JKS Communications, it states that you did not receive a diagnosis of Behcet’s disease until you were 32 years old. When did you first start to experience symptoms and how long were you “undiagnosed” for afterward?

I first exhibited symptoms at 9 weeks old. I had crops of sores coating my mouth and throat that lasted a couple of weeks, according to my mother. I was unable to take a bottle. It was very traumatic for her. I continued to have those symptoms, including very high fevers, very high white blood cell counts, and other symptoms up until I contracted Uveitis at age 32. Uveitis led the doctors down the correct path to my diagnosis.

How many doctors did you visit before you received a diagnosis?

In the year they diagnosed me alone there was a team of five ophthalmologists, my primary care, and a team of rheumatologists—I dealt only with the rheumatologists’’ expertise in Behcet’s.

Did any of your doctors minimize your symptoms and/or infer that your condition was “all in your head”? If so, how did that make you feel at the time and did it influence your career as a writer?

The bigger issue was doctors misdiagnosing. I have been tested for everything from Herpes to Leukemia to AIDS. That experience did influence my writing of Joshua and the Shadow of Death. Joshua’s misdiagnosis and trial and error with Harold’s childhood are part of what drives Joshua’s narrative in this first novel.

What was the hardest part about waiting for a diagnosis?

Being adopted, I never knew if it was a common genetic problem, or worse if it was something I could pass on to my spouse. There were times I wondered if I would survive, with good reasons. I once survived a fever of 110 degrees. When I was diagnosed at age 32 the symptoms were so advanced; I was given less than 5 years. That was 20 years ago. I keep telling my doctors to hang in there, one of these years they’ll be correct.

The press release also mentions that your “battle with Behcet’s, which has also caused Fibromyalgia and Fibromatosis, make it difficult to physically type” and “slow” down your writing process. What type of things help you to overcome the physical limitations of your conditions on really bad symptom days?

When people would ask me this question in the past, I used to joke that it was better living through Chemistry. Unfortunately, my body is now resistant to common, opioid-based, pain medicines. There are a couple of muscle relaxers I can tolerate in very low doses. Unfortunately, the way I deal with it today is to stop writing when I have a really bad day. To help offset this, I try to take advantage of the good days. On average, I can get in two hours a day, three days a week before needing to take a day off. In the winter it’s less than that.

Do you find it easier to work through pain or take a break if your body is telling you to do so?

I have learned it is better to take a break. I used to try to fight through it. The result was either gibberish on the page or a version of writer’s cramp that would lock my fingers in place for up to two days, even with muscle relaxers. Dealing with the ever-progressive pain has been the toughest part at this point in my life. In my younger days, I worked as an IT Manager, and I was full speed for 365 days a year. It’s been tough learning to put on the tortoiseshell and slow down.

Which symptom(s) do you think limits your ability to write/work?

I have tendonitis and Fibromyalgia in my hands. Also, I have neuropathy in my forearms. All three of those together are what stop my writing on a normal day. Although Behcet’s has taken its toll, it’s these secondary symptoms and diseases that have finally knocked me down several notches. In addition, I injured my back when I was in my early 20’s. Behcet’s loves to go after areas that are already damaged. So, sitting or standing for too long can make me forget about my hands, in a bad way.

There are a lot of running themes and interesting characters, relationships, and critical subjects that are touched on throughout Joshua and the Shadow of Death. How did your personal experiences in having a rare disease and other chronic illnesses influence you to include these elements in the book during the writing process?

For the first book in this series, I wanted to do something different. I’m telling the story from the doctor’s point of view, as opposed to the characters with the disease. By thinking through how people see me and my challenges, Joshua and the Shadow of Death gave me an opportunity to allow the reader, and myself, to experience what it is like to have an unknown condition from the viewpoint of people close to the patient, as opposed to the patient. Of course, this is a mystery thriller, so I took that relationship dynamic and placed it into the thriller narrative.

Out all the main characters in the book, who do you think you personally resemble the most and why?

I love answering this question because it is an easy one. Harold is 100% me. From his sense of humor, his need to protect his friends and family, to his medical condition. I only wish I was 6 foot 5 instead of 5 foot 8.

Was there a reason that developed the plotline of the book around psychiatric illness rather than chronic illness? If so, why?

There is a twist to my real-life story. I am adopted. My adoption left us with a big mystery even after successfully diagnosing Behcet’s. It is very rare in the U.S. 25,000, give or take, but in the Middle-East and East, it is a common disease. My bright blue eyes, fair skin, and bald head with a touch of gray on the side do not appear to be all that Eastern. For the disease, it turns out my unknown father was of Turkish descent. My birth mother had immigrated to the U.S. with her family from Denmark, so I’m half Danish. Being half anything in the U.S. is exciting since, as Bill Murray put it once in Stripes, “We’re all mutts.” Researching Dane’s history brought me to the Vikings and the Berserkers. That gave me the idea of creating two orphan half-brothers who did not know they were berserkers in modern-day America. This series gives me the ability to pull in every angle of my life.

Do you know anyone, or have you ever met anyone, with Berserker/Blind Rage Syndrome?

There are a lot of stories with people going “Berserk” in battle or emergencies in contemporary times. The Berserker in this series is a combination of fiction and fact. I researched original legends, as well as original “accounts” by the Vikings as well as their enemies. I also researched modern-day examples of people going “Berserk.”  I took all this information and created a modern-day Berserker.

Managing health and wellness when you have a chronic illness and/or rare disease is often maddening at times and it’s easy to see how you made the connection between the Berserker Legend and Behcet’s Disease. Has your experience with have Behcet’s Disease, Fibromyalgia, and Fibromatosis ever sent you into an episode of rage? If so, can you give an example and discuss how the episode was resolved?

When I was young, crops of mouth sores were common. Growing up in the ’60s, ‘70s and early ‘80s, roughhousing was common. Unfortunately, hitting me in my mouth when I had sores always triggered a rage. My older brother, who could easily take me as a kid, ended up on the wrong end of my rage one day. He accidentally hit my mouth when we were roughhousing, and I ended up knocking out one of his baby teeth. He got tooth fairy money, so it ended okay. Normally I would hit inanimate objects as I do not hit people as a habit.

Do you have any advice for those living an undiagnosed physical or mental illness on how to get a proper diagnosis and/or the best medical care?

Be your own advocate. Make sure you keep copies of your medical records. There is a lot of groupthink in the medical community. If you have a rare, or unknown disease, try and find a doctor who is open-minded and willing to research every possibility around your condition.

I would add there is a new wrinkle with modern medicine: WebMD and other online medical sites. One of the worst things you can do is tell your doctor you read something online. The exception to this scenario is finding information from medical colleges. I was very fortunate; I started my career at Microsoft in 1992. I had access to the internet before people knew what that was. When I was diagnosed in 1997, I knew how to query and bring up research papers from places like MIT or Boston College. Take the time to educate yourself on how to find medical information your doctor will value. My doctors were always impressed with the medical school articles I would bring to them when I had questions on experimental treatments or possible complications.

What advice would you give to other inspiring writers that may be suffering from a chronic and/or rare disease?

First, if you want to earn an income writing, this is a marathon, not a race. Even healthy people can take years to see their work produce an income that will support them. My financial goal with writing is to one day be self-supporting again.  As I like to say, at 52 I prefer to be depositing into Social Security, not requesting an early withdrawal because my body has managed to disable itself.

Let’s put aside economics and focus on the craft. The most important advice I can give is this, permit yourself to work at your own pace and style. That action will set you free to write the way that works best you. The biggest killer to the creative process, in any discipline, is the inability to create in your way. (G. McPherson, personal communication, December 7, 2018).

If you’d like to purchase a copy of Joshua and the Shadow of Death,

please visit one of the following online retail locations:

References:

American Behcet’s Disease Association (2014). Behcet’s Disease. Retrieved from http://www.behcets.com/site/c.8oIJJRPsGcISF/b.9196317/k.904C/Behcets_Disease.htm

Coccaro, E. (2018). Intermittent Explosive Disorder in Adults: Treatment and Prognosis. Retrieved from https://www.uptodate.com/contents/intermittent-explosive-disorder-in-adults-treatment-and-prognosis

Diamond, S.A. (1996). Anger, Madness, and the Daimonic: The Psychological Genesis of Violence, Evil, and Creativity. New York: State University of New York Press.

DNAexplained (2013). The Warrior Gene. Retrieved from https://dna-explained.com/2013/06/16/the-warrior-gene/

Genetic and Rare Diseases (GARD) Information Center (2018). Behcet Disease. Retrieved from https://rarediseases.info.nih.gov/diseases/848/behcet-disease

JKS Communications (2018). Gary McPherson Examines the Beast Within in His Breakthrough Thriller. Retrieved from https://www.jkscommunications.com/gary-mcpherson-examines-the-beast-within-in-his-breakthrough-thriller/

McPherson, Gary (2018). Joshua and the Shadow of Death. Charlotte, NC: Author.

McPherson, Gary (2018). The Berserker Series. Retrieved from https://gmacwriter.com/

https://www.pexels.com/photo/boy-child-clouds-kid-346796/

Childhood Abdominal Migraines

I recently got an opportunity to talk with a representative from the Diamond Headache Clinic and they have shared this awesome presentation on childhood migraines, including abdominal migraines that were actually one of the first diagnoses I considered when I first began looking for answers to explain some of the many gastrointestinal symptoms I had as a young child myself. I thought this presentation could be a really good resource to share here in case any of these symptoms can help anyone still looking for answers for their own symptoms.

Courtesy of https://www.diamondheadache.com/

So, if you ever feel like giving up…

I wrote this post in response to a discussion that was going on in the Undiagnosed Warriors Support Group last night. I wanted to share it here because I thought that maybe it could help some of you. I know I haven’t posted all the findings/diagnoses like I’ve been promising,  but I really am working on it. I’m still struggling to put it all into the right words at the moment, even after all these months. As most people who have messaged me can attest to, I’ve had a lot going on lately. Nevertheless, I do hope that the following can at least give you a sense of where I’m coming from following my diagnosis:

“It’s so easy to fall back on those [negative] feelings because doctors and everyone else question our experiences. I can’t say what it’s like to be on the other side but, for a long time, I accepted an inaccurate psychological diagnosis, even though it never felt right to me. I even went to years and years of psychological counseling and therapy (including CBT, Biofeedback, Exposure Therapy, etc.), in addition to trying out different anti-depressant and anti-anxiety medications, but the meds only made me feel worse.

As I got sicker and sicker, the more the people in my life started to doubt both me and my illness. I honestly thought that I was going crazy; that perhaps I was actually ‘hallucinating’ my symptoms; or maybe making myself sick. After so many years of telling myself that what I was feeling was purely anxiety or some kind of subconscious eating disorder that I was possibly unaware of, I started to believe that the doctors probably got the diagnosis wrong. My psychologists at the time agreed that there was no way that a psychiatric diagnosis could explain all of the physical symptoms I was experiencing, especially now that my symptoms were clearly becoming more and more visible to everyone around me.

Even though I have a diagnosis now, I still find myself questioning myself – if that makes sense. Like, does it REALLY hurt as bad as I think it does? Or am I overreacting like the doctors said?

“It’s not in my head” – This is actually my own CT scan of the head/brain (Photo credit: Undiagnosed Warrior, 2016).

At the same time, I have also lived with approximately 20 different conditions (many of which are known to cause debilitating pain) for more than 25 years and yet, somehow, I managed to work a full-time job up until two years ago – all while going to school and staying active in sports and other clubs/activities/volunteer-work until I just couldn’t do it any longer. For most of my life, I had been taught to push through the pain; that pain was simply weakness leaving the body, and I had to keep fighting until every last ounce of the pain was gone.

Even now, I still push myself too hard sometimes because so many people have either called me lazy or crazy. It made me want to work that much harder just to prove them wrong.

Often, I find myself struggling with knowing when I need help. For instance, I never know when I should seek immediate medical attention because I’m so afraid that I’ll go to the hospital or something and be told that there’s nothing wrong with me or that my symptoms are not serious enough to justify an urgent appointment. Alternatively, I’ve also had multiple doctors tell me that I have the highest pain tolerance out of any of their patients. At least there’s that. If that’s true, though, then why do I feel so very weak and overdramatic when I tell people the truth about how in really feeling? Why am I in so much pain all of the time?

The worst of it happened just last week, when I had to prepare hundreds of pages of medal tests, lab reports, and clinical notes, along with an 11-page letter written letter, just so that I’d have enough “proof” to confirm that I was, in fact, physically stuck – and not with the kind of symptoms that are caused by a psychiatric illness either. Why did I do this, you ask? It was because one of my doctors accidentally wrote the following in my medical chart:

No joke. I was told that the only way I could have this changed or removed from my medical record was if I met the doctor face-to-face to discuss it further. It didn’t matter at all that the other specialists I’ve been seeing a lot longer all agreed that I had true “autonomic dysfunction” (or dysautonomia) based on objective autonomic testing, but they seriously wanted me to come into the office to confront the doctor in person. Ironically, my appointment was scheduled for the second last day of Dysautonomia Awareness Month – how perfect.

Although the somatoform diagnoses ended up being the result of a clerical error, I still felt pretty defensive and broken over the whole ordeal. I thought to myself, after all this – after all that I’ve been through and how hard I had to fight for a diagnosis; all the tests, all the doctors, and all the failed treatment and medications that have literally made me sick or have taken away years from my life – how dare anybody  [anybody meaning the doctor in this case] question my authenticity or call me a liar – how dare he do that to me! Obviously, this hurts me far more than I can express, I also knew I shouldn’t have been that angry over it either. I knew (and my other doctors knew) that this diagnosis wasn’t correct but I was angry nonetheless. I mean, I was really, really angry and spiteful about it. More importantly, I was hurt by the idea that I needed to “prove myself” once again. It’s so exhausting having to explain yourself over and over, while also feeling ignored at the same time.

I wish that I could say that this all gets better with time but I honestly don’t think that I’m in a “good enough” place to really make a fair judgment on this as of yet. All I can say to anyone reading this – or anyone still awaiting a diagnosis – is to learn how to trust your instincts and then follow it with your whole heart, particularly when it comes to your own health and the presentation of symptoms. Whether you’re dealing with physiological symptoms or psychological symptoms (or perhaps even both), please do yourself a favor and trust yourself because it’s these instincts that will ultimately guide you to where you need to go and how you need to get there. You can (and will) make it through this mess – that I can promise. It’ll just take everything you’ve got and you’ll have to fight twice as hard to simply get your doctors to listen.”

Gut instinct is really the key here because it is an adaptive, biological response in the body whose sole purpose is to keep us alive. It goes back to that whole automatic-autonomic response thing that we all have hidden deep inside us somewhere that ultimately drives a person’s will to survive. And, at the end of the day, isn’t that what life is all about? Learning how to survive, despite the danger?

Just checking in

Hey everyone.  Just checking in with my readers. 

How is everyone?

I’ve been missing you and writing  so much lately.

I apologize for my delayed absence, but I haven’t been feeling well since I started tapering off my meds for the next round of medical testing.  It’s been hard even getting to my appointments,  let alone everything else.  Hopefully, I’ll have a lot more to update here soon. Thanks for sticking with me.

Sincerely,
The Undiagnosed Warrior

Quick Update On The New Year

Hello, Everyone.

Sorry that I’ve been M.I.A. lately, but (as per usual) everything has been hectic once again. However, I wanted to check in with you all and provide some updates as to what’s been going on in my life and with my health.

First off, thank you to everyone who has followed along with my blog this past year and to all the new readers who have spent time browsing and viewing everything I have put up on the blog (especially those from the Nutcracker Syndrome Group Facebook Page- and thank you to Margreta for her wonderful research skills and for finding/linking to my page). I have a lot of great information currently saved that just needs to be edited and posted, so hopefully all of that will be up live on the page here soon. Also, this week is super exciting because it’s the 7th Annual Wear Purple Day Event for SMA Syndrome Awareness but more about that later (see details below).

As most of you know, right before the holidays I took a short break from medical testing, doctors appointments, and school. 3-weeks off?!?!?! While I was hoping to be super productive and get so much done during this time, I sadly spent almost my entire break in bed as I was knocked down hard by an extreme flare that -even now- I’m still not completely over. It’s been an awful couple of months for sure and most of my days have been spent sleeping rather than doing much of anything else. Quite disappointing. Then with school and appointments starting back up, I already feel like I am so far behind on everything.  Not to mention, I’ve  had a couple hard blows from some of my doctors and with my disability claims already this year. So, needless to say, 2016 has been far from a perfect start. Likewise, it hasn’t been overly exciting either.

At the beginning of January, I submitted the last of the documents that were requested for converting my short-term disability plan into long-term, although my STD claim ended the first week of December and I have yet to hear anything in regards to a decision. I do know that they sent my case for medical review and I’m guessing that’s not a good sign in terms of getting approval. I knew when I received the other denial letter from my first STD case that they were setting up to deny my long-term (or, at least, it seems like it anyway). Financially it’s been tough, but somehow we’re making it through – at least, for now.

Also, I’ve had some follow-up appointments with my both primary care physician and my gastroenterologist, as well as continuing the usual weekly appointments with my therapist. My bloodwork and urinalysis were showing some irregularities at the start of December, so we re-ran those labs hoping to see if there had been any changes  that could perhaps lead to a diagnosis for the underlying skin/allergy/systemic disorder that nobody can seem to figure out. Like usual, though, my tests came back normal; except for finding protein and urobilinogen on my urinalysis and the low vitamin D levels and a decreasing eGFR rate in my blood serology. However, the good news is that my amyloidosis protein serology came back negative and my cortisol levels (which were low over the summer)are within normal limits again. My primary care had ordered an ultrasound of my left kidney last week to make sure nothing else was going on, but the hospital informed me yesterday that my scan was normal as well. So no more answers, but no change in diagnosis at this point either.

My GI appointment is a long story, so I’ll have to save that for another time. In fact, I plan to use it as an example for my follow-up post to The Good Patient (Part 1 of 2) – The Bad Patient. I bet you can see where I am going with this. Also, I have some other things I want to discuss in regards to my psychological evaluations and appointments in therapy, but that will have to wait until I have more time as well. The next few weeks are hectic, as I have more labs and medical tests ordered. Next week I am scheduled for more blood screenings, a 24-hour impedance and pH study (since I couldn’t complete the first one), and an anorectal manometry – how miserable, really. I’m also waiting for the hospital to call so I can schedule an MRI Abdomen/Pelvis (which I have not had before) and then I go for a tilt-table test on March 1. After all, of that is said and done, I will then follow-up up with my PCP, GI, and Cardio doctors to discuss whether or not to move forward with the surgery that the vascular surgeon recommended for the Nutcracker Syndrome. I’m sure more things will come up between now and then, but that’s the plan so far.

Aside from all that, it’s just making it through another semester in school and learning to  somehow manage my symptoms, but that is becoming harder as time and time goes on. Does that sound like I’m doing enough to you? Some days I think so; other days I feel terrible for not doing more with myself – oh the dreaded guilt of chronic illness.

Finally, as I mentioned at the start of this post, this Thursday – January 28th- is the 7th Annual Wear Purple Day to promote SMA Syndrome Awareness. It’s an online event, but everyone (both patients and non-patients alike) are encouraged to join the event via the SMA Facebook Page (linked here) and post fun pictures of you or anyone else wearing the color purple that day in support. For more information, you can either send me a message through my blog, Facebook, or email accounts or you can message the event page directly. Please share with your friends, family, co-workers —> everyone and anyone that you know. Too many SMA Warriors have been lost this year and it’s important to bring awareness to this condition. I’m hoping to be posting videos, photos, and research both here and on the Undiagnosed Warrior Facebook Page starting tomorrow.


[Taken from the 7th Annual Purple Day for SMAS Page and written by Marge Reed (for the 4th Annual PURPLE Day- 28th Jan, 2013) and (slightly) adapted for the 5th Annual PURPLE Day, on the (28/01/2014), by Maria McMillan and again (updated for our 6th Annual event from 28/01/2015 to 30/01/2015) and updated for our 7th Annual PURPLE Day, Jan 28th to 31st, 2016.]

THE STORY BEHIND PURPLE DAY:

"On January 28, 2010, my friend Samantha Mina traveled 800 miles from Virginia to check into the Florida Mayo Clinic for SMA Syndrome.
An innovative SMA Mom Maria McMillan decided, before Samantha's departure, to ask friends and fellow survivor families around the globe to wear purple that day to show their support for SMA Syndrome sufferers. With hundreds of RSVPs and dozens of uploaded photos of purple-clad people, the first annual Worldwide SMA Syndrome Awareness Day was born.
Then nearly 1000 people attended during each 2011 and 2012, praise the Lord!
Indeed, the past couple of years were marked by leaps and bounds in global SMA Syndrome education and when the documentary style TV show "Mystery Diagnosis" scouted Samantha and featured her story on the Discovery Health Channel on 83010 the survivor support group swelled to 1200 members.

At 8th January 2014 our Awareness group now has 1508
members!

As at 4th December 2014, our Awareness Group now has 1756 members!
*As at 18th December 2015 our Awareness Group now has 2113 members*
We had almost 1400 attendees for our 4th Annual PURPLE Day, Jan 28th, 2013! (Inclusive of 'Non-Facebook attendees).
So, to celebrate all the incredible progress in SMA Syndrome Awareness that has been made thus far and to encourage its continuation in 2014 we invite you to participate in the 5th annual worldwide SMA Syndrome Awareness day on Tuesday January 28 2014 (to Thursday 30th January, 2014), to allow for global time differences, by simply wearing a purple article of clothing and/or a purple ribbon, or a whole purple outfit, if you wish! Please feel free to take a photo of yourself to upload to this page.
And now, we invite you to attend our 6th Annual worldwide SMA Syndrome Awareness Day on Wednesday 28th January 2015 to Friday 30th January, 2015 (to allow for global time differences.
We had 3991 attendees for our 2015 event!
*And now, we invite you to our 7th Annual 'PURPLE Day' from Thursday, Jan 28th to Sunday, January 31st, 2016*
Thank you for sharing our 2016 event both on Facebook and in the 'real world'.

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(Once again, you can join the event here)