Some of you know that NarcolepsyGreek meaning loosely "sleep seizure." Disorder marked by recurrent and uncontrollable attacks of daytime sleepiness, often associated with temporary muscular paralysis known as cataplexyCataplexysudden, brief loss of muscle control brought on by strong emotion or emotional response (laughter, excitement, surprise, anger, etc.) This may or may not cause full body collapse. In all cases, the patient is FULLY CONSCIOUS and aware but cannot move. Episodes last anywhere from a few seconds to many minutes. is not my only favorite subject. I am very much interested in spreading awareness about chronic and rare diseases in general, and take my “job” very seriously. Recently, a friend of mine revealed a situation that caused me to become not only angry, but determined to help facilitate answers. The following is an article and cover letter being sent to congresspeople, healthcare facilities, and newspapers. This post will be made available for download in the files section in the hopes you will take a moment to copy and paste and send to your own representatives, and share with everyone you know to spread the word. Your tweet or +1 may very well save a life.
Justin MaHaffey is a 28 year old man who lives in Chattanooga, TN. He lives alone with his disabled mother, whom he cares for, and his cat, Pixel.
At 16, Justin became ill. He was losing weight, spending a lot of time in the restroom, and in nearly constant pain. Eventually, he missed so much time from school that he dropped out and got his GED instead of a diploma.
For two years, he searched for answers, until he was so sick in May of 2001 that he was admitted to the local hospital for fluids, medications, and testing. He was finally diagnosed with Crohn’s disease.
Crohn’s is an autoimmune disease that primarily causes inflammation of the digestive tract. Although most commonly found in the colon, Crohn’s can be anywhere from the mouth to rectum. Patches of disease are caused by the body’s immune system attacking its own tissues and leads to thickening and scarring of the intestines and other areas. Because the digestive system cannot work properly, Crohn’s can lead to severe malnutrition, bowel obstructions, abscess, infections, and various disorders stemming from those complications. (http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001295/) Crohn’s is incurable, and untreated, can lead to death.
After his hospital stay, Justin’s Crohn’s disease seemed to be under control. He took steroids, watched his diet, and attempted to work and live a normal life as a young adult. It wasn’t long before the pain returned and he had to start cancelling plans, the pain keeping him in bed, and he began to avoid social interactions for fear of having to cut plans short. Since his diagnosis, Justin has had 3-5 flares of his disease every year, landing him in the hospital for 2 weeks or more each time to get his body under control.
Since 2001, Justin has had 3 major surgeries to attempt to remove diseased tissue and improve his quality of life. He has had obstructions removed, resections, and part of his colon removed. In 2009, unable to hold down a job as the flares became more frequent, he applied for Social Security assistance. He is awaiting a hearing scheduled in October to see if he will be granted the assistance he needs, or if he will be denied again.
Since Justin cannot work, he suffers depression not only from feeling as though he has failed himself and those he cares for, but the loss of basic human companionship. He so often feels sick that he rarely even allows visitors.
Justin lost his insurance awhile ago. Even if he could afford it, options for COBRA ran out long ago, and assuming he could scrape together the money for a private policy, he would have to wait a year to be covered for his pre-existing condition – assuming any company would even accept him as a policy holder.
In the last year, he has been in the hospital for nearly six months altogether. His medical bills now total over $1 million dollars after ten years of being in and out of hospitals. He has begun selling his collection of action figures and collectible toys to try to cover some of the over $600 a month in medication he requires just to keep him feeling well enough to eat.
Justin is in the hospital again. His doctors tell him he needs surgery for an abscess that has not responded to antibiotics and steroids. Already a fairly thin man, Justin has lost more than 20 pounds in the last few months, and that’s not including what has been replaced by the water retention from the steroids he is on.
He has been told he may not survive the surgery. Years of having to pick and choose affordable medications and not being able to afford the sorts of foods that are best for his condition have left his intestines “shredded,” according to one doctor. At the very least, surgeons will have to remove years of built up scar tissue and a good amount of infection. Most likely, they will need to remove the rest of Justin’s colon, leaving him with a colostomy bag for the rest of his life.
Without surgery, Justin will die. It may be from sepsis when they can no longer keep the abscess under control and it bursts. It may be from an obstruction caused by the narrowing of his intestines. It may be from complications of malnutrition, but he will die.
Justin is not having surgery. He has no insurance, and even with his application for Social Security pending, he has been denied for or maxed out every assistance program he has applied for. He’s been told that even if the doctors were able to operate for free, his recovery will take at least six months, and the hospital cannot keep him as an inpatient for that amount of time. If he goes home without the funds to get his post-surgical medications and supplies, let alone without being able to have a visiting nurse, he will die.
If Justin does not get well enough to leave the hospital without having surgery, he may miss his hearing on October 12th and be denied once again for Social Security assistance. Talking to others on the support group websites he is a member of, Justin has been told and is beginning to agree that Tennessee is one of, if not the hardest state to obtain assistance in. His hopes are not high.
On his Facebook profile this week, Justin humbly asked for donations. His goal is to raise a little over $200. He says that will cover about 4 weeks of the most important medications he will need when he is released from the hospital this time. He has started talking in terms of managing his pain only, hoping he makes it to Christmas, and what his options will be if and when there is nothing to stop the pain. The side effects of the steroids, malnutrition, and pain medications have already affected his heart and he wonders now if the Crohn’s will be what kills him, or something else.
“I hate being a charity case…I see people suffering all the time and now I’m one of them. I just wish I could be stronger and this [Social Security] stuff will hurry along…so I can take care of myself and help others as they have helped me,” says one of Justin’s blog posts a few days ago on his website, NerdyJustin.com. A few sentences later, he reminds his readers that he is collecting Coke Rewards points to donate to Toys for Tots this holiday season, an annual drive he pushes every year for his favorite charity.
While he awaits his fate, Justin continues to do small jobs for his friends, mostly computer troubleshooting and the occasional web page. With no degree or job history to speak of, he cannot charge much for the little time he can spend on his projects between injections, CT scans, and bathroom trips.
Yet while Justin suffers, he lends his support to others in his situation, often reassuring other patients in support groups that better days will come and their pain is only temporary. A year ago, while I personally was undergoing some difficult medical issues, Justin messaged me almost daily via Twitter, just to make sure I was okay.
I’m not the only person Justin has affected. As a matter of fact, his plight has become a project. A small group has started the “Team Nerdy Justin” Facebook page, with information on where to send donations to help him. One member, only just approved for Social Security herself, has pledged to match donations dollar for dollar up to $1000, money she will take from her much anticipated backed benefits check when it comes, money she has carefully budgeted to finally get car repairs done, stock up her pantry for the first time in months, and buy her young daughters an outfit or two. Others have pledged dollars, and several have designed t-shirts and other memorabilia to sell online with proceeds going directly to Justin’s bills.
We are incensed that such a wonderful man can be ignored while politicians and corporations argue about healthcare. A man with incredible potential may die because his disease is exactly what keeps him from the income and insurance he needs. A group of people out of work, without their own insurance, struggling to get by on their $674 a month, less than a worker making minimum wage in this country, have gathered to help him out of principle, and out of love.
I hope you will share Justin’s story, and help us pay it forward to a man who has been so humble and selfless in times no one would fault him for doing the opposite.
For more information, check out https://www.facebook.com/pages/Team-Nerdy-Justin/146415435451933
https://www.facebook.com/event.php?eid=213513058709273 or one of Justin’s personal websites: http://nerdyjustin.com or http://justinmahaffey.com
September 13, 2011
To Whom It May Concern:
My name is Jessica Stanton. I am the founder of two online support sites for people with chronic illness, and administer to corresponding chat groups on Facebook.com to bring people who are suffering together. Part of my mission is to connect those patients with the resources and information they need to make informed decisions and help educate themselves, their families, and their medical providers.
As part of my job, I am often given the title of Patient Advocate. Although I do not often get involved with individual situations for many reasons, I have recently become aware of one young man’s plight that has caused me to take pride in that title and encouraged me to take it very seriously.
I have attached a detailed article on Justin MaHaffey, a 28-year-old Tennessean who suffers from severe Crohn’s Disease. In short, Justin has been suffering for over ten years and has come to a point that without proper care, he will lose his life to his condition. Being the primary caregiver for a disabled mother and unable to hold a job himself, Justin is uninsured and unable to cover the costs of his medical care.
Several of those patients I talk to daily and who have had the pleasure of talking to Justin have enlisted my help and made it a priority to do everything in our power to get Justin what he needs. This is why I am contacting you. We would ask that you please share Justin’s story and use it to build a fire under fellow citizens, healthcare establishments, and lawmakers to not only help Justin, but to make changes so that no one need read their own story in his. Your attention may very well save lives.
For more information, please feel free to contact me at Jess@planetnarcolepsy.com, or leave a message at 860-917-0732.
To see what we’ve done so far and get in contact with Justin directly, visit the Team Nerdy Justin page at https://www.facebook.com/pages/Team-Nerdy-Justin/146415435451933. Links on that page include those to an online fundraiser on his behalf, as well as to businesses around the country offering discounts and matching donations.
Founder of PlanetNarcolepsy.com and AwarenessMatters.org