Someone has a stroke every 40 seconds. Be prepared to recognize it and help. Remember F.A.S.T.—> (F)acial drooping, (A)rm weakness, (S)peech difficulty, and (T)ime to call 911.
With the change of season come the beautiful colors of fall. These stunning photographs remind us that every transition brings new opportunities to find beauty in life.
Keep it going. 8,000 signatures left to go. Please help us by asking your U.S. friends/ family to sign.
Dear friend, Please sign the new White House Petition Against Forced Organ Harvesting in China launched on Dec. 3 on the White House website: ”We the People,” set up by the Obama administration. http://wh.gov/5Jmn It must reach 25,000 signers before Jan. 1 to get a formal response from the White House. Background information about the petition and the doctors who co-sponsored it: http://organpetition.org/
MITOCHONDRIAL DISEASE AWARENESS WEEK SEPTEMBER 15-21
This is a little late, because this week’s been crazy as it’s ever been, but this post is so necessary I couldn’t just leave it and let the week pass me by.
I might not be able to explain every single mitochondrial disease to you, but I can explain the one that impacts my family the hardest. The one that’s slowly taking my little sister apart, bit by bit.
That disease is known as Kearns-Sayer Syndrome.
Kearns-Sayer Syndrome (KSS) is what’s known as a mitochondrial DNA deletion syndrome, something that leads to the body’s cells being unable to produce enough energy to function properly. This lack of mitochondrial production leads to several health issues, most serious, and is eventually fatal. "But Bekka-" I hear you saying, "-life itself is fatal! We all die eventually!" Well, KSS is fatal in the same sort of way cancer or heart disease is fatal; life expectancy for those suffering from KSS is extremely shortened, especially if they cannot reach the proper care necessary to slow its progression. KSS leads to health issues such as heart block, limited eye movement (accompanied by eye droop) that progresses to paralysis of the eyes, diabetes, short stature, mild skeletal muscle weakening, and so on. The average onset is before a child turns 20 years old, and there are no known risk factors or predilections for race or gender/sex.
However, there are several things that set KSS apart from cancer, or heart disease, or even other mitochondrial diseases. KSS is extremely rare; so rare, in fact, that only 226 cases were reported in published literature by 1992. Because it’s so rare, it’s what’s known as an orphan disease. Orphan diseases are those that are not funded large research grants or opportunities, simply because there is no real profit for pharmaceutical companies in finding a treatment or cure; it’s just too rare to offset the costs of studies and clinical trials.
"How does this affect you, though? Last I heard, you were healthy!"
I am, yes. My sister, however, is not. She suffers from KSS, and it’s hard to watch. Wanna know why? Well, for one, let’s look at what she’s had to deal with in her 14 years here on earth:
- She was diagnosed with type 1 juvenile diabetes in 2005, when she was in kindergarten. This means she has to check her sugar 8-10 times a day, as well as inject herself with insulin, just to stay alive. That number increases if her sugar begins crashing or gets too high. She has to worry that she’ll faint during class, or even that she just won’t wake up in the morning.
- In 2010, she had to undergo a serious surgical procedure to implant a pacemaker as a preventative measure against heart block that was already developing. She was only 11 years old.
- Not only did she have to worry about making it through getting something implanted in her heart, she had to worry about making it through getting the anesthesia; KSS makes using general anesthesia extremely risky, to the point where a specialized anesthesiologist has to perform the administration.
- Later that year, she began losing her hearing. Just this year, we found out that she’s gone completely deaf. Now get this; she loved singing. She can’t sing anymore because she cannot hear herself sing.
- Last summer, she underwent another surgical procedure. This time, she had to get two titanium rods implanted in her spine to correct a spinal curve that developed in just a few months because of rapidly weakening muscles in her back.
She’s one of the lucky ones. We caught her heart block before it caused her heart to fail, but if any of her other organ systems fail… it could be that easy to lose her. It’s already too easy to lose her.
As an older sister, it’s hard to watch someone so young struggle under this disease. I will never get the image of her hopped up on morphine after her pacemaker implantation out of my head. Never. She’s only 14 years old and her body is rebelling against her.
She’s my hero.
She’s learned to deal with the fact that we are practically alone in dealing with this disease. There is no cure, there is no treatment, and there’s nothing in the pipeline either. And yet she still goes to dance, still plays outside with her friends, still lives a relatively normal life.
No one becomes a Kearns-Sayer survivor.
The picture I’ve attached is from the Energy for Life Walk I attended in April earlier this year that benefitted the United Mitochondrial Disease Foundation, the only real foundation that is doing anything at all to raise money for treatment, let alone a cure. A record breaking 3,000 people showed up to that walk. And we were all connected by mitochondrial disease, something that slowly breaks someone down, slowly crumbles them to nothing as we stand by and watch helplessly. We laughed, we danced, but the biggest moment for me was when my sister realized how many people came out to support her team alone. I’ll be the first to admit that I cried.
The thing is, UMDF is so, so far from finding a cure. They need all the help they can get, and that is why I painted “hope” on my cheek at the walk. Because even as we do our best to raise money to fund studies and trials, all we have now is hope. All we can cling to is hope.
How can you help?
- Raise awareness. Tell people about mitochondrial diseases. Spread the word. Pass on the story of the 14 year old slowly falling apart, tell them about how hard it is for families to deal with watching their children die before their very eyes.
- Go donate to UMDF. Raise money and help them fund studies for treatments and possible cures, as well as education efforts to inform more people about mitochondrial diseases.
Co-recipient of the 1997 Nobel Peace Prize, Handicap International is an independent and impartial organization working in situations of poverty and exclusion, conflict and disaster.
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