I have remained relatively quiet during this whole viral explosion of the ALS Ice bucket challenge on Facebook. I figure its time that introduce my grandmother Rose who died about 18 months ago of ALS. Rose was the most generous and caring woman I have ever known. People often speak well of the dead, but I really do mean to say Rose would have endured any suffering or made any sacrifice to better the lives of her children and grandchildren. We were lucky in that the variant of ALS she had was slowly progressive and she made it over 5 years from the onset of symptoms to her death. Some people barely make it 6 months. The first photo is in 2008 on a cruise with my mother and Aunts, shes standing. The second is with Lauren and I shortly after getting our short white coats as second year medical students and paying her a doctor visit in 2011. The last is at the ALS walk in June 2012. She died six months later. She was so proud of what I chose to do with my life but she never saw me graduate from medical school. The reason that the Ice Bucket Challenge is such a big deal is because ALS is a horrible disease caught in this unfortunate zone of being relatively unprofitable for drug companies to do research on. It is known as an orphan disease. However, unlike most orphan diseases it is not genetic (About 5% of cases of ALS are familial, 95% are sporadic and could happen to anyone at any time with no warning, even you, the youngest case Im aware of died at age 16). It has a prevalence of about 30000 Americans a year (affects that many at one time), but yet is more common than extremely rare genetic disorders which affect only hundreds. This doesnt seem like much, but when compared to the lifetime risk for an average person (about 1:400 to 1:1000) thats rather confusing. How can something that occurs so commonly only affect 30000 people in the US annually? Because those people rarely live very long. On average about 2 years. Sometimes people die within 6 months. During that time people with the disease continue to waste away and slowly grow paralyzed while their mind is unaffected (in most cases). Some choose to go on a ventilator and live in a fully paralyzed state unable to move or communicate. Others like my grandmother choose to forgo going on a ventilator. Inevitably, the disease takes everyone afflicted by it. So before you comment about how silly or pointless the ice bucket challenge is, or how people are doing it for attention or likes or whatever, know that the ALS association has received 20 times in donations this month what they usually get. Know that Rose got her wheelchair, medicine, and other equipment totally paid for by the ALS association. Know that that equipment and chair were previously used, and were owned by someone else who had died of the disease and passed them on to others. Know that when she died, we gave it back to the ALS Association to pass on to someone else with ALS. The ALS association gave a tremendous amount of support to my family, but they cannot provide everything for all affected due to not having unlimited funding. My family took rotating turns caring for her. We all contributed as much as we could but ultimately she had to sell her home and move into a much smaller and handicap equipped place. Selling her home was necessary to have the money to pay for her visiting nurse and other healthcare expenses the ALS association couldnt cover. My aunts and mother spent all their available time caring for her, but still had to work a full time job to support their own families. Not only is the disease devastating to the person afflicted and to the families caring for them, but it also carries an enormous financial burden. To all of you who have done the challenge and not donated a single cent, I thank you from the bottom of my heart. Youve drawn attention to the monster that killed my grandmother, and those who can afford to donate are now aware of how horrible this disease is. They now know how it has affected families like mine. You can now say you know someone who lost a family member to ALS. Ive tagged my family members in the photos so you can see the real people who cared for Rose in her fight with ALS. If you read this status, Im challenging you, donate to the ALS Association, do the ice bucket challenge, or share this message on your timeline so others can see how this disease continues to affect families all over the world.
Posted on: Fri, 22 Aug 2014 15:27:20 +0000
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