Monthly Archives: November 2012

People: Triple Threat – Wheeler Students Help Friend (Julia Falvey) In Fight With Disease

 

 

Triple threat: Wheeler students help friend in fight with disease
October 24, 2012 12:00 AM | 1946 views | 1 1 comments | 13 13 recommendations | email to a friend | print

From left, Wheeler High School seniors Sabrina Williams, Sara Dada and Divya Achtani are organizing a 5K in honor of a friend and organization. Their classmate Julia Falvey, now a student at Georgia Tech, was diagnosed with Reflex Sympathetic Dystrophy, a rare neurological disorder, two years ago. The race will raise money for an organization that benefits research and people with RSD. <br>Staff/Laura Moon

From left, Wheeler High School seniors Sabrina Williams, Sara Dada and Divya Achtani are organizing a 5K in honor of a friend and organization. Their classmate Julia Falvey, now a student at Georgia Tech, was diagnosed with Reflex Sympathetic Dystrophy, a rare neurological disorder, two years ago. The race will raise money for an organization that benefits research and people with RSD.
Staff/Laura Moon

From left are (front row) Achtani, Dada, (back row) Williams and Falvey. ‘I really support them and what they’re doing because with me, the hardest thing is that there is no cure, but scientists are trying new things,’ Falvey said. <br>Special

From left are (front row) Achtani, Dada, (back row) Williams and Falvey. ‘I really support them and what they’re doing because with me, the hardest thing is that there is no cure, but scientists are trying new things,’ Falvey said.
Special

MARIETTA — A group of students at Wheeler High School have taken the idea of an AP Literature senior project to a whole new level by hosting a run in honor of an organization and friend who has been struggling with a neurological disorder since 2010.

Sara Dada, Divya Achtani and Sabrina Williams, all seniors at Wheeler in east Cobb, learned two years ago that their classmate Julia Falvey, now a student at Georgia Tech, was diagnosed with a rare neurological disorder Reflex Sympathetic Dystrophy.

This Sunday morning, the students are hosting a 5K and one-mile race and Tot Trot at Wheeler’s track to raise money for an organization that benefits research and individuals struggling with RSD.

Falvey said, “I really support them and what they’re doing because with me, the hardest thing is that there is no cure but scientists are trying new things. It’s really hard to have hope and confidence after all these medications and months of physical therapy. My friends are giving that hope to other people by fundraising.”

The 17-year-old was diagnosed with RSD in August 2010 after pulling two muscles in her left leg while at summer camp that June.

“I wasn’t responding to physical therapy, and the pain was really bad. I went to my orthopedist and he suggested I go see a neurologist,” she said. “It’s very, very acute and excruciating.”

RSD is a lifelong nerve disorder that causes pain under the skin and in the bones by a malfunctioning nerve.

Falvey underwent intense physical therapy with the assistance of some pain medication and has been in remission for a little over a year and a half.

Shortly after she went into remission, Dada said she began thinking of ways to raise funds for an RSD organization that will benefit research for finding a cure for the disorder.

“I began looking into different research and found the American RSD Hope website,” said 17-year-old Dada.

She started by raising money on her own, selling mostly wrist bands and collecting donations, but it wasn’t until the beginning of this school year when she and her classmates decided to host a formal fundraising event to not only help out the organization but earn a good grade in one of their senior classes.

“I thought it would be a great way to make money for the cause and it’s large scale,” Dada said. “I think when I first planned it I didn’t realize how much work it would be.”

The hard work has been well worth it for all of the girls though.

Achtani, 17, said, “I’m really glad we did do it because now other things we do, will come easier. It’s for a good cause and Julia is one of our best friends. It’s also been a nice learning experience.”

Williams, also 17, said it has been a challenge but well worth it.

“It’s been a lot more work than I thought it would be, but I’ve had a lot of fun learning how to plan this event and raising all this money. It’s a really good feeling knowing that you’re actually benefiting a good cause,” she said.

Each student has shared responsibilities in the project, including finding sponsors, organizing the walk itself, designing T-shirts and managing a website.

“The challenge is finding runners now,” she said. “It was surprising to me how difficult it can be.”

Their goal is to get 250 participants but as of Friday, they only had about 30 people signed up.

“I’ve been talking to classmates about the event, family members and their co-workers,” Williams said. “I’m just trying to make sure that everybody knows what’s going on.”

While the girls have done most of this project on their own, they did have a little support from an adult in the community.

The students’ mentor is Cobb County real estate broker and president elect for the East Cobb Rotary Club, Brenda Beshara, who recently helped put together a 5K event similar to what the girls are working on.

“It’s been a really great experience because these young ladies are amazing,” Beshara said. “Everything I suggest for them to do, they go out and do it. This is their largest project ever but they are very enthusiastic and nothing seems to be a hurdle for them.”

She said the students contacted her shortly after the school year began and has been working with them for a couple of months.

“I would do it again. It’s been a very nice experience,” Beshara said. “What’s so encouraging about doing this is that these kids really do have a good head on their shoulders. They are kind-hearted and put everything into this project.”

The event costs $20 per person to enter. Check in begins at 7 a.m., the 5K race at 8 a.m., the one-mile run at 8:45 a.m. and the Tot Trot at 9 a.m. The 5K and one-mile races will start at the track and travel through a nearby neighborhood.

Participants are also encouraged to dress up in a Halloween costume and winners of both the costume contest and races will be awarded during a brief ceremony at 9:30 a.m.

Sponsors for the race include In-Kind, Active.com, Big Peach Running Company, Einstein Brothers Bagels on Shallowford Road, Fontis Water, Panera Bread Company on Chastain Road, Kroger Grocery on Roswell Road, Moe’s, Costco on Barrett Parkway, Wild 105.7, Chuck Williams Photography, Pilates Tutor Studio, Warshaw Properties Inc., Todd K. Banister Realty, Sofn’Free and Cobb EMC.

For more information or to sign up, visit http://www.givehopersd5krun.slwcubed.com or go to http://www.active.com and search for “Give Hope: RSD Trick ‘N Trot.”

Read more: The Marietta Daily Journal – Triple threat Wheeler students help friend in fight with disease

 

 

 

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People: (Video) Chelsea Farnum: RSD/CRPS changed my life.

 

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Research: Does Mitochondria play a role in RSDS CRPS? Do antioxidants help?…

Saturday, April 2, 2011

Putting the “con” in mitochondria, the “funk” in dysfunction

Mitochondria (from the Greek, meaning “string grain” — yeah, it’s lame, but it sounds good in Greek) are independent little one-celled organisms that live inside your cells and make energy for them. If you ever studied the ATP cycle (also called the Krebbs cycle or the citric acid cycle, depending on where you went to school and how deeply they went into it), then you should know that this is where the ATP cycle takes place.

Without mitochondria, you have no way of converting food into energy.

When you were being conceived, half your cells’ genes came from your mother and half from your father. All of the other stuff that goes inside a cell came from your mother. This includes the mitochondria. (This is why mitochondrial DNA is used to track maternal inheritance: it always comes down the female line.) Your mother’s cell hosts conception, just as (normally) your mother’s body hosts gestation.

Mitochondria have a fairly smooth outer layer and a deeply-rumpled inner layer. Most of the action happens inside the rumpled layer. This is where the ribosomes, most of the fluids and loose protein, and the ATP-making particles hang out.

Cells, including mitochondria, need various proteins to do their work with. Large proteins get carefully handed from the outside world, through the outer layer of the mitochondrion (singular of “mitochondria” — sorry, it’s still Greek), then into the inner layer.

If the smooth outer layer is damaged, this makes this transfer process screw up, and the inner layer gets disrupted, ripping up the cell. Granules and nucleic acids all over the place. Bang goes that ATP production.

Those are some busted mitochondria.

This kind of damage happens in response to certain kinds of toxins (including certain medications for AIDS and all psychoactives — including antidepressants and pain medications, which seems especially mean!), occasionally from genetic disturbance, and occasionally as a consequence of illness — or nerve injury and its complications.

Mitochondrial dysfunction has been repeatedly and profoundly linked to neurogenerative diseases like Alzheimer’s and Parkinson’s; cell-metabolism problems like heart disease, insulin resistance and type II diabetes; and several diseases often mistaken for CRPS.

Not surprisingly, symptoms of mitochondrial dysfunction are the worst in tissues that use the most energy and have the largest number of mitochondria per cell: nerves, muscles, brain.

Recently, it has been strongly associated with CRPS. And the cherry on top: it plays a vital role in neuroplasticity, or the way your nerves and brain change — for better or worse.

Hell-o, “pain-brain.” We thought we knew ya!

Knowing why it’s so damnably exhausting to walk a mile, when it used to be fun — fun! — to run 3, is a bit of a relief. First question that leaps to my mind: How do I fix ’em? How do I give them what they need to get better and protect themselves?  The answer seems simple: antioxidants are what’s needed to prevent and repair that damage (good explanation of that here) to the walls of the mitochondrial cell.  Mitochondria are both the biggest makers of reactive oxygen species and the biggest scavengers of them, so of course it makes sense that that’s exactly the kind of help they need when they can’t keep up.

Downing antioxidants by the bucketful is one way to get them in. Intriguing for three reasons:

  • Taking moderate amounts of the antioxidant Vitamin C after surgery hugely reduces your chances of getting CRPS. (Upper limb and lower limb surgeries were studied.)
  • There’s some indication that Vitamin K may help combat the progress of CRPS.
  • Taking antioxidants is pretty easy: delicious food, accessible pills, not bad.

Kind of depressing for one simple reason: it’s iffy whether, once you’ve got the disease process going, the antioxidants can get where they’re needed and save your poor beleaguered mitochondria. … Having said that, I notice that the writers of that article seem to be trying to sell something, and that makes me very suspicious of their conclusions.

Next, I’ll offer suggestions for patients, suggestions for clinicians, and then wind this up with a foray into the question of whether mitochondrial issues have a genetic component, like being X-linked — the way a cat’s fur color is!

For people with CRPS — So what is a poor, confused CRPSer to do?

Two things that you hardly need reminding of:

  1. Trust your sense of your own body.
  2. Do what works for you.

Most antioxidants are not going to hurt you, without letting you know first (that is, make you nauseous or feel funny.) Take vitamin C in doses no larger than 500mg, since larger doses tend to trigger your gut to throw the C away. Go ahead and try stress-vitamins, co-enzyme Q-10, N-acetylcysteine, hair-skin-&-nails vitamins (these are really fat-soluble antioxidants) … try things, take what helps, and put aside the rest if they don’t do anything. Keep in mind that things change: what doesn’t work now might work later, and vice-versa.

Also, eat all the leafy greens you can get: seaweed snacks, Mom’s collard greens, kale krunchies, spinach salad, you name it. It’s amazing nerve food.For antioxidant powerhouses, look for dark-red and dark-blue fruits: pomegranates, blueberries, red wine, chocolate (though some CRPS people have to avoid that for its nerve effects), mangosteen (my favorite fruit), cranberries, and so on.

Stay smart. Stay loose. Keep going.

For medical people — clinical takeaways:

Most treatment standards, particularly for CRPS, are based on science that’s over a decade old. They shouldn’t be changed blithely but they can certainly be improved. There is plenty of room for that.

The following points are intended as additions to the standards you follow for CRPS, as they are good guidelines for mitochondrial and neurologic support in a system compromised by CRPS.

  •  After any limb surgery, give Vitamin C 500 mg, QD or BID, for a couple weeks beforehand and 30-50 days after — or to metabolic tolerance, if that’s too much. Use a food-associated form for best uptake. This one intervention will reduce the risk of developing CRPS by 80%, according to the best current data.
  •  We assume your patients are taking an adequate multivitamin and are eating plenty of greens, dark fruits, and wholesome proteins. So make sure they are.  Direct them to food bank, food stamps or other food assistance as needed. Give recipes. (No kidding.)  2 benefits: better antioxidant uptake if taken with antioxidant-rich food, and increasing the patient’s own sense of agency/participation improves pain and affect.  (If you don’t believe in multivitamins, then get out of the supermarket/pharmacy and get some real ones.)
  •  Stress the antioxidant vitamins.  In acute CRPS, give water-soluble antioxidant vitamins in 1-3x the doses you’d give a healthy person.  Give fat-soluble antioxidants (A, D, E) up to 2x normal, testing levels as indicated.  Consider vitamin K inj.
  •  In cold/chronic CRPS, give water-soluble antioxidant vitamins in 3-5x the doses you’d give a healthy person (start at 2x and work up).  Give fat-soluble antioxidants (A, D, E) up to 2-4x normal, testing levels as indicated; consider weekly mega-dose D (as used in AIDS.)  Give vitamin K inj.  Check serum or urine levels as indicated, especially as we develop absorption disorders.
  •  Give “uber-antioxidants” like ubiquinone (co-Q 10), N-acetylcysteine, or glutathione. There are indications that these can provide substantial benefit — though again, not normally curative of chronic CRPS. They are impressive, especially for mitochondrial-dysfunction issues.

These ranges are empirical; if you can find the funding to do the science to develop more reliable ranges for this population, so much the better.

Adequate tissue oxygenation and perfusion can return substantial function and significantly reduce pharmacologic burden. Patients can demonstrate this, even where the data have not been published and peer reviewed. Therefore, use antioxidants rigorously and intelligently.

Image credit: http://www.vrp.com/antioxidants/-r-lipoic-acid-unique-mitochondrial-antioxidant-fights-premature-aging.  (Article’s not bad.)

Why all that anti-oxidation when the medical literature is not definitive?  2 reasons, which you ought to know for yourselves:

  1. Between the cortisol and systemic oxidative stresses, it can’t hurt and it will help something. You’ll see a distinct improvement in affect, activity, motivation and well-being when the dose is optimized, even if it can’t be expected to be curative.  Making your patient’s life more bearable is an essential part of your job.
  2. Let’s say this together, everyone: statistics mean nothing in the case of the individual.  Accepted, standardized medicine is what you start with, but, when your case is taking you out to the margins, you go to the margins, because that’s where your success is most likely to await.

Keep in mind that doctors are not the only scientists interested in the human body.  Be prepared to look into other disciplines for leads when your own offers no good options.

Try Nursing, PT, Nutrition, Therapeutic Massage — you’ll realize that nobody knows more about soft tissue’s functional physiology in vivo than therapeutic massage science, and if nothing else, the exercise in intellectual flexibility might do you good.

The accepted style is very different, but the info they have is tremendous.

Forward-looking thoughts:

  • Consider infusing vitamin K into CRPS-damaged tissues. I would love to see studies on that.
  • Figure out how to deliver antioxidants in a targeted way. (Now! Please!) This would be a good way to save a lot of lives and end tons of misery.

This is a partial excerpt from the article….

Click here for the full article online.

 

 

 

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