JRA - 6 yrs later, she's climbing to the roof of Africa

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Hi Everyone,

I know it's been a few years since I last posted an update on my daughter

. Many of you who are currently on this message board, may not know her

story so I'll append it to this update.

2004 was the year that my 14yo daughter's dreams were crushed by JRA. She

started high school unable to walk up a flight of stairs or carry a textbook to

class. The prognosis from traditional docs was grim (to say the least). Then we

found AP and she really and truly started on her journey back.

2010 was the year that my 20yo college junior decided she wasn't content with

studying environmental issues at her comfortable campus. Instead, she packed up

and went to East Africa where, for 4 months, she's conducted field research (in

the bush with the wildlife, bugs & very primitive living) in conditions that

pushed the fittest person to their limits, and often beyond. She has hiked

countless miles, carried her weight in gear, conducted a vegetation/erosion

survey that required patience & physical endurance, and even tagged a lion or

two. The students finally completed work that has promise to make survival

possible for many people. It would seem like this would be the ending to this

part of her story, but...

It started with her realization that she wasn't going to be back to do the

Arthritis Jingle Bell Run this year. Then, she decided to organize a benefit

event to support children's health issues in her host countries instead. So that

is when 'Climbing for a Cause' was born to support UNICEF's children's health in

Tanzania/Kenya. Yesterday morning, she and 6 teammates began climbing to the

'Roof of Africa'. It's 19,231ft to the summit of Mt. Kilimanjaro, the highest

mountain in Africa & 4th highest of the 'seven summits'. They are climbing the

Machame route (the shortest but also most challenging). Starting into the

rainforest this morning and will climb to 12,000ft by tomorrow. Altitude

sickness is their biggest challenge, followed by wind/ice/snow/extreme cold near

the summit (snakes & lions don't phase them anymore). The statistics are not

good - a large percentage of climbers cannot adapt to the extreme altitude. Last

week, a Navratilova had to be carried down the mountain & a third of that

team of 27 athletes didn't make the summit. Shortly before starting the climb

yesterday, posted this status to her Facebook:

" everyone has mountains to climb, sometimes those mountains are in our

mind...true triumph is about trying whatever the result " going to the roof of

africa tomorrow. -15 at the top and all kinds of toughness going up.

6 years ago, a flight of steps and walking down the hall between classes was as

daunting as the 19,231ft climb and 100km trek of Kilimanjaro. 's climbing

to benefit UNICEF this week but she says that her message is dedicated to all of

you. Every step of the climb will be for the fight against JRA/RA. She continues

her fight everyday & has been on AP the whole way. Please keep them in your

thoughts and prayers this week.

From July 15, 2006: JRA - smiles on her journey back

I thought this update might give a boost to everyone on a road back

(especially Cheryl's Jess who is on a road very much like ).

So it was 2004 and she was at her first Olympic trials (though at

14yrs probably not a real contender) and the pain in her feet, wrists

and hands were becoming an ever bigger problem. Then July 2004 at US

Nationals, she took to crutches between competitions. A world

reknowned pediatric rheumatology center said she was no longer an

athlete and would be in a wheelchair by summer 2005. She started high

school burdened with a grim prognosis and with directions to scale

down her dreams and goals... not just athletic ones but academic,

social, everyday life. We were also told to plan on attending the

annual AJOA conferences.

We found the Road Back in Dec 2004 and started a remarkable journey.

Simple things like the ability to walk between classes and take the

stairs instead of a handicapped elevator returned by year end. She

took the toughest classes and made A's. Had a very busy life with many

extracurriculars. By April 2005, she had not only returned to

competition but had requalified for nationals. She was definitely on

the road back. We did not feel the need to go to the AJOA in 2005.

I posted 'JRA and AP a year later' in Jan 2006. That was when we

realized that this must be a remission. Since then, the road has only

become smoother. She doesn't take Minocin 200mg everyday but now takes

it every other day. She doesn't hurt if NSAIDs are skipped a day or

two. But since she's in continuous athletic training, she is careful

to prevent and treat any signs of inflammation from injury or overuse.

She is ever so careful about her diet, supplements and vitamins,

exercise and training. The cartilage in the damaged joints has

regenerated, range of motion has returned to normal, no more pain.

(But she can still predict an approaching storm better than the

Weather channel with her joints!)

So she boarded a plane for Atlanta today and we noted that the AJOA

conference is being held there this week. I wondered how many JRA kids

she might walk past in baggage claim. But this was a day for smiles

instead of a time to attend a conference & learn how to manage a

lifetime of disability. Because as the AJOA conference winds down,

across town another group is gearing up. It's time to train for the

world championships with the Olympic coach, 2004 medalists and

national team members from around the world. Now, the dream for 2008

may be impossible and even meeting Jess & Cheryl at the 2012 games a

very long shot, but for today, right now, there's one happy kid who's

journey has taken her to a place where she's on par with the best.

She's an athlete again.

From July 28, 2006: JRA - Doctor said 'miracle'

Hi Everyone,

A couple of weeks ago I posted our update in 'JRA - smiles on her

journey back'. Rach made the trip to Atlanta (not to attend the

juvenile arthritis conference) but to 'endure' intensive athletic

training (aka. world championship bootcamp).

So did she survive? Amazingly, yes! The first few days I heard from

her several times a day... it's awful!...I'll never survive!... my

feet are killing me! Do you think I'm flaring?... can I just quit?...

She didn't quit! And when I didn't hear back from her for a few more

days, I worried.

But then she finally called late one night. She was hiking back to the

dorms with teammates having just walked miles to a store for midnight

snacks. Sorry she hadn't called. Up at 6am and nonstop training until

dinner at 7pm. The food is terrible. Evenings they have a few hours to

go places (by foot). I ask - What about your plantar fascitis? What

about your knee, fingers, wrist, elbows? What's flaring?! Oh, I feel

fine now. A few days into the most physically demanding thing she ever

tried, all the aches & pains went away. Something about getting used

to the training & stretching everything out... No pain. No swelling.

No JRA flares. She was doing fingertip pushups again. Walking 5-6

miles a night for fun after a grueling day of practice.

She said the experience had helped her make peace with her Olympic

dream and the past disappointments from JRA's setbacks. She trained

with the best athletes and coaches in the world. She geared up

everyday next to her idol (an Olympic medalist) & best yet, when she

scored the win in a hotly contested dodgeball tournament her Olympic

idol led the rest of the team in a rush to high five & jump on her in

a screaming heap. One day she realized that the Russian national coach

was giving her extra attention, acknowledging her performance and even

liked her. She said that she discovered that she was finally 'back'.

Able to compete without a JRA handicap. The decision to pursue the

Olympics or not is no longer determined by her disease. It will be the

normal questions of what sacrifices she is willing to make & how much

of her life gets put on hold to get to 2012. She's not ready to make

that decision yet. For now, she'll get ready for this year's

competition & look forward to college recruiting next.

It just so happens that Rach's lifelong pediatrician is my close

friend ( & her sister's godmother). She is also past president of a

medical examiner's board, the longest sitting member on the same

board, is on the board of 2 (or 3) medical schools, sits on this, that

& the other committees, is overall a very influential physician (met

with the governor one night, then the next day was interviewing the

candidate for medical director of the group of 3 children's hospitals

for a certain city). She doesn't profess to know rheumatology but

after treating kids in one of the busiest practices I know of for 30

years, I think she has seen her share of JRA.

Rach wanted to drop in for a surprise visit before coming home. She

was shocked! Overwhelmed maybe? Taken aback? She was so happy (tears

in her eyes happy)! She said over & over " It's a miracle! You're my

miracle child! Who would ever believe it but you're living proof! " She

looked at the thumb that had regrown cartilage & healed & shook her

head & said again that she was all the evidence she needed. We talked

some about AP & Dr. McPherson Brown (who she already knew about) & the

probable relationship of the glucosamine, chondroitin, MSM, etc to the

new cartilage growth. She said Rach's recovery was beyond anything she

had ever thought possible. She had prayed everyday for Rach, worried

and wondered how long she'd be able to walk, knew the prognosis was

bad. She acknowledged that the traditional treatment options are

dangerous and that minocycline is safe & well, just so simple. She

asked for more info on AP, current protocols, studies, doctors who

know it, case histories.

I asked her why so many docs are still hostile to alternatives in the

face of mounting evidence in their favor. She said that a good doctor

should be open to safer, alternative treatments and be grateful to see

living proof of its benefit. Sad to say, she knows way too many

colleagues who are blind on that point. Too many unduly influenced by

big pharma marketing & incentives, grants or just fear of deviating

from the status quo. There's hope that there will be change &

encouraged by the new medical specialty in Complementary & Alternative

Medicine at a few medical schools. But she has seen Rach and she's all

the proof she needs to believe there's hope for a better treatment for

JRA.

I know some of you have asked that I post Rach's story more

prominently on the site. I've talked to her about it and she's not

quite ready to 'go public' but is getting there. She has kept her JRA

secret from most of the people in her sport. She doesn't want the

disease to have power over her in that refuge. Only her personal coach

and a teammate/doc knows the details. As her confidence in beating the

disease growing, she's getting closer to putting a face on her story.