A San Diego Acupuncturist You Should Meet: Gail Brent

Written By: ingridricks - Oct• 30•14

FullSizeRenderI’ve heard so many great things recently about Gail Brent, a San Diego-based acupuncturist who treats RP and other degenerative eye disorders, that I knew needed to learn more. Last week I reached out to her for an interview and instantly connected with her. She’s warm and genuine, and comes highly recommended by fellow eye acupuncturist Andy Rosenfarb and the RP patients who see her.

IR: How long have you been treating degenerative eye conditions?

Gail Brent: Since 2003.

IR What interested you in this particular field?

Gail Brent: When I was four, I had eye surgery on one of my eyes because it was crossed. It was a very traumatic experience. Today, that same surgery wouldn’t even require an overnight stay. But back then, I had to spend ten days in the hospital with both eyes bandaged. It was so traumatic for me that for years, I had nightmares that I would wake up and not able to see. It stuck with me throughout my life. So when I read a magazine article on Dr. Per Otte that focused on the micro-acupuncture procedures he had developed to treat blinding eye disorders, I thought, “I have to learn this.” I was already an acupuncturist so I understood the tremendous healing power of acupuncture. I called his office and asked if he would be teaching a seminar anytime soon. The woman at the desk said yes, to give her my name and number. I did and never heard from her. But I was determined and every few months, I called again and repeated my request. I did this for three and a half years. The last time I called, the woman said, ”Let me have him call you.” And he did. He told me he had two others who wanted to train with him and he offered to let me join. It turns out that one of the others being trained was Andy Rosenfarb, who I knew from acupuncture school.

 IRCan you tell me about your RP treatment protocol?

 Gail Brent: I use micro-acupuncture and electrostim, a micro-current stimulation unit that patients can also purchase and continue to use at home.  I also incorporate energy work and do a lot with nutrition and supplements and Chinese herbal formulas. In addition, I’ve added some points to treat the constitution of the person. We know something’s going on with the eyes, but I also look at what else is going with the person that needs balancing. When it comes to RP, the most common issues I see deal with the kidney and liver. I also see a lot of emotional stress with RP patients. Stress plays such a huge part in eye disease—it affects the liver, and the liver affects eyes, so I have to work with all parts of that.

IR: How long are your treatment sessions?

Gail Brent: I usually offer them in one or two-week series. I treat three times a day, Monday to Friday, with a total of fifteen treatments each week. Each treatment is about thirty minutes in length . I also do energy work with each patient. I spend a lot of time with my patients because I want to get to know them to see what else might be gong on with them.

IR: How often do your RP patients return for treatment?

Gail Brent: For RP, I would definitely say it’s best to come two weeks for the first visit because RP patients really need the kick-start. Then I advise that they come for a week every three or four months for at least a year, and then we can see how it goes from there.

IR: What’s your success rate treating RP patients?

Gail Brent: I’ve never thought of it that way, but I would say about eighty percent of the RP patients I treat respond to the treatment. But the amount of improvement varies with each person, just like any other kind of treatment. Diet, nutrition, exercise, and the emotional state the person is in all plays into it, and then it depends on if their body responds to treatment. What I tell people with RP and Ushers is that, because there is nothing Western Medicine can do right now, they should at least give it a try. The wonderful thing about this treatment is that there are no negative side effects, no way it makes their condition worse. Either their vision improves, stabilizes or the treatment doesn’t work. You never know until you try and I’ve seen wonderful miracles happen.

IR: Tell me about the energy work you do.

Gail Brent: It’s called The Reconnection. Dr. Eric Pearl is the one who developed this particular form though I’ve been interested in energy work since I was little. About two years ago, something inside me said to incorporate this into my treatment, so now I do it on every patient. I don’t know how it’s directly affecting their eyes, but I see it helping their emotional state, which is so important to their overall eye health.

IR: How much does your treatment cost?

Gail Brent: I charge $1,200 for one week and $2,400 for two weeks. I keep it as affordable as I can because I know people struggle just to get here. I recently had a patient who came all the way from South Africa. I would love it if someone down there started treating degenerative eye disorders to make it more accessible. More trained acupuncturists need to enter this field and help people dealing with degenerative eye diseases.

 

For more information on Gail Brent, please visit her website: www.healthandvision.com.  If you’d like to talk with her or learn more about her treatment. call (619) 276-3661 or email her at gbrentlac@aol.com

 

Quinoa Chop Chop Salad from Claire’s Kitchen

Written By: ingridricks - Oct• 26•14

IMG_0322

My friend, Claire Thornburgh, is a fabulous cook who is living proof that life can still be enjoyed incorporating an anti-inflammatory diet. She’s generously agreed to share some of her favorite recipes with all of us on a regularly basis– starting with her Quinoa Chop Chop Salad.


ClaireClaire:
This is a favorite in or household—lots of texture from quinoa, wild rice and all the crunchy vegetables, plus lots of flavor from the herbs (don’t skimp on these!), and the vinaigrette. We like to serve it with some avocado slices, some nuts and whatever extra protein we have on hand. We buy everything organic. I also cook a much larger amount of the legume/seed base and freeze portions to save time later. Notice that I don’t add peppers or tomatoes, because of their inflammatory properties, but I’m no expert on the best ingredients, health-wise.

All ingredients are optional and proportions completely changeable. Leave out, substitute, season to your taste. The base of the quinoa, lentils and wild rice is where we start, but you could easily put in chick peas, or another legume, leave out the expensive wild rice, put another “seed/grain” of your choosing. If you love raw onions or scallions chop some in, or you’ve got a crop of fennel you need to use up—in it goes. I try to add vegetables or fruits that won’t discolor too much since we munch on this for several days. My chopped vegetables generally exceed in bulk the amount of the cooked legumes and seeds, which I’ll call “grains” for simplicity.

I love the flavor of the “italian” version with olives, zucchini, basil, oregano and garlic (along with the basic ingredients that I always put in: celery, kale, parsley, chives). I sprinkle pine nuts on it before serving. A quinoa tabouleh is pretty common these days, with mint and cucumber. I once added some Vegenaise mixed with curry powder in a version with grapes. That was good. I’m planning to try a “Thai” version with cilantro, basil, cucumbers and chopped peanuts. The vinaigrette will need some white kind of vinegar, fish sauce and lime instead of lemon.

This recipe is a sample to get you started.
Quinoa Chop Chop Salad

Ingredients:

1 cup quinoa
! cup lentils—I prefer the french green or the “caviar” for being little
and less mushy
1/4 cup wild rice
1/2 cup chopped broccoli stems (These keep better than broccoli flowers in the salad and add a nice crunch. Remove fibrous peel. We use the flowers in stir-fry or juice.)
1/2 cup chopped celery
1/2 cup chopped cucumber
1 cup chopped kale, collard or other greens (I like the greens chopped pretty fine. About 1/2 inch)
1/2 cup chopped fresh parsley
1/4 cup chopped fresh chives
1/2 cup chopped fresh cilantro, and/or tarragon, and/or basil, and/or oregano and/or 1/4 cup mint
1 cup halved kalamata olives, or 1 cup halved red grapes
2 zucchini, (quarter lengthwise, toss with avocado oil or olive oil and roast under the broiler for a few minutes until they just begin to brown), cut into 1/2” slices
2 cloves garlic—I prefer mine lightly cooked, so peel them and throw in with the cooking lentils for a few minutes, then chop

Vinaigrette:

1/2 cup avocado oil or olive oil
juice of two lemons
1 tablespoon good mustard (dijon, or, my favorite, with tarragon, available at some markets)
1 tablespoon honey, a bit of stevia or other natural sweetener (again, optional)
1 tablespoon balsamic vinegar.
Salt and pepper

Optional ingredients to add before serving:

pine nuts
pumpkin seeds, sesame seeds
avocado
feta, parmesan, mozzarella or other cheese
cooked meat
Instructions:

Since you’ll want the “grains” cold, cooking them is easy, like pasta—no measuring, just put each in a pan with plenty of water and simmer on med/low heat, stirring occasionally. Note, however, that dry food like this sometimes is not perfectly sorted before going to market. I have had the occasional gritty bit. So rinsing and sorting is usually recommended. Eliminate this step at your own risk—I at least do a cursory visual sorting as I add the ingredient to the water.

The wild rice is hard to overcook—it’ll take over 30 minutes to get done enough. When the white insides start to show, I let it cook about 15 more minutes.

Cold lentils, on the other hand, taste best if they’re just cooked enough, and they don’t take as long as you’d think—as little as 15 minutes depending on the size. Keep tasting until they are tender enough—not crunchy, but not mushy. If I overcook the lentils, they go into the next batch of soup, not in salad.

The quinoa is also quick to cook. To save on pans, I cook the wild rice in a larger pan with extra water. When the white begins to show I add the quinoa. In 12-15 minutes they both are ready. The quinoa has little white “tails” that separate when it is nearly done.

Cooking the base ingredients is all about tasting (and not boiling over).

Drain the “grain” in a sieve and run cold water over it until it isn’t hot anymore. Drain well.

Place the vinaigrette ingredients in a large bowl and mix.
Add the “grains” and all the other ingredients and mix thoroughly.

If there is not enough dressing for your taste, just mix a little more and stir it in. If you are experimenting with new flavors, just put in a little at a time. Keep tasting.

Serve heaped on an avocado half, or as a side dish to a more traditional meal. Sprinkle with nuts or cheese, a swirl of balsamic glaze or more herbs. Throw on some chunks of tofu or chicken or smoked salmon. If you had the salad for lunch yesterday and want a different flavor, mix up a little mayo, sour cream or Vegenaise with a bit of curry and stir it in your portion today. Let your taste buds and dietary needs guide you.

Keep tightly covered in the refrigerator. Stir to distribute dressing before serving.

 

 

Ask the Expert – Acupuncture & Retinitis Pigmentosa

Written By: ingridricks - Oct• 21•14

new andy picI’m starting a new Ask the Expert feature on this blog where practitioners who use naturopathy, acupuncture and other integrated health therapies to treat RP will answer your questions. My first Guest Expert is Dr. Andy Rosenfarb, who specializes in treating RP and other degenerative eye conditions with acupuncture and naturopathy.

Question: If people suffering from RP start acupuncture treatment and then decide to stop, will their vision loss accelerate faster than usual?

Dr. Rosenfarb: The answer is absolutely not. I’ve seen many cases where a patient’s vision loss seems to arrest with acupuncture treatment and holds steady with ongoing maintenance treatment. Some patients start acupuncture and discontinue for various reasons. In those cases, it is most likely that at some point, some of the visual gains they made will be lost and  their eyesight will continue to deteriorate as it did before they started acupuncture.  Once a patient stops treatment, they are no longer doing maintenance work. It’s kind of like just deciding to stop brushing your teeth and quit seeing your dentist. Eventually, tooth decay will set in.

Acupuncture increases blood flow to the retina, which in turn increases oxygen, ensures vital nutrients reach the eyes, and helps promote detoxification of ocular waste products. Retinal cells will eventually die with impaired blood flow, inflammation, acidosis, and toxic accumulation. For that reason, at this time, ongoing acupuncture maintenance is required in order to preserve vision. It would be great if it was a one-time fix, but that’s never the case with these chronic, neuro-degenerative conditions. 

 Andy Rosenfarb, ND L.Ac, has been specializing in Chinese Medical Opthalmology since 1993. His unique AcuVision system combines various acupuncture methods including Micro Acupuncture, traditional acupuncture, auricular acupuncture, laser acupuncture and electro-acupuncture to treat RP and other degenerative eye conditions. For more information, visit: www.acuvisiontherapy.com

 

 

Falling Down and Standing Back Up

Written By: ingridricks - Oct• 13•14

resetSo after making it the entire month of September on a fairly strict anti-inflammatory diet (no dairy, no gluten, no corn, no beef…and only an occasional glass of red wine), I fell off the wagon in a big way this past week.

The culprit? Travel.

I seem to be fine when I’m at home, but the minute I step on a plane and head out of town for work or to meet up with friends, my diet is shot. This past week I’ve downed beer, Mexican food (plenty of flour tortillas, corn chips and cheese), Indian food—which included a helping of nan, a slice of pizza and lots of sandwich bread during lunches while working at a school. I even ordered a steak and baked potato one night and loaded the potato with butter. And without a juicer in my hotel room, my entire vegetable intake for the five days I was away came down to a BBQ chicken salad and a garden omelet.

Beyond the diet disaster, I didn’t do my eye exercises or acupressure, didn’t get in a cardio workout, didn’t do my daily micro-current stimulation. I just couldn’t bring myself to do any of it — even though I KNOW how important it all is.

Now I’m back in Seattle and making a vow to get back on track. I think I’m beginning to understand what an alcoholic must feel like: it’s one day at a time, with occasional slip-ups along the way. All I can do is stand back up, brush myself off and get back on the wagon.

I kicked off today with a green juice , stir-fried broccoli and a morning off eye exercises and acupressure. I also hit the gym for a cardio workout during lunch and have salmon on the dinner menu. Rather than beating myself up over this, I’m reminding myself that all any of us can do is the best we can do on any given day. And if we screw up one day (or even five days), the key is to start over the next.

Here’s to all of us who are doing our best to save our eyesight — and to hitting the ‘reset’ button when we occasionally mess up.

 

FFB Spokesperson Shares Thoughts/Experience with Acupuncture

Written By: ingridricks - Oct• 01•14

Fame & Fashion photo with kids october 2013I was immediately fascinated when I heard April Lufriu’s story because of her role as a national spokesperson for the Foundation Fighting Blindness (FFB).

April’s involvement with FFB goes back to 2007, when she started doing vision walks to raise money and awareness that she hoped would help find a cure for her sister’s RP. Then, in 2010, she learned that she also suffered from RP, and that her son and daughter did as well.

While April’s RP is fairly moderate, her son Brandon—now fifteen—suffers from the aggressive X-linked form of RP that affects males. Devastated to learn the news and determined to help her children save their eyesight, she stepped up her involvement with FFB and became a national spokesperson for the foundation after winning the prestigious Mrs. America pageant in 2012.

April’s determination to fight this disease “at every angle” recently led to her try acupuncture for her son. Now, along with continuing to work alongside FFB to fight for a cure, she’s sharing her family’s acupuncture experience in hopes that it will help others battling RP know that there’s something they can do TODAY to help their eyesight.

Here is April’s story—in her words.

IR: How did you become the national spokesperson for the Foundation Fighting Blindness?

April: After I was crowned Mrs. America 2012, the Foundation Fighting Blindness offered me the prestigious title because of the notoriety & national spotlight I was receiving being Mrs. America. Then I proceeded to win the Mrs. World title just eight months later, which catapulted me into a larger spotlight. My mission was to raise awareness for Retinitis Pigmentosa as well as raise funds for research to find a cure. Even though my reigns are over, my fight continues!!

IR:  What made you decide to give Dr. Rosenfarb’s acupuncture treatment a try?

April: After hearing a testimony from a client’s employee who has been seeing Dr. Andy Rosenfarb for nine to ten years, I was convinced his treatments were working because she is still able to drive and function normally with Usher’s Syndrome. I was so baffled by this news that I had to learn more.

IR: I know your son has undergone two week-long treatments with Dr. Rosenfarb over this past year. What benefits, if any, has he experienced? And what has it meant for you, as his mother?

April: The true test was my recognition of knowing and seeing that Dr. Rosenfarb’s treatments were working on my son. A mother’s test of knowing her children is the ultimate test. On the third day of the first round of treatments, my son mentioned that he could style his hair in the mirror without his contacts or glasses. He couldn’t do that before. During the second round of treatments, my son was amazed that his central vision at night showed a glimpse of his surroundings that he could not see before at night. When my son visited his ophthalmologist one month after the first round of treatments, the doctor was amazed how his acuity improved from 20/80 to 20/50 & 20/60. Our doctor could never before correct my son’s vision with corrective lenses to that degree.

IR: For so long, it’s felt like a big divide between the Foundation Fighting Blindness and the acupuncture/holistic health approach to treating RP. It’s so upsetting to me that those of us struggling with RP continue to be told that there is nothing we can do to halt the progression of our disease or improve our eyesight — when so many of us are discovering otherwise. I think that if we are going to beat this disease, both sides have to work together on an integrated health approach that combines acupuncture, diet, lifestyle and other holistic treatments with stem cell research, gene therapies and other exciting advancements. Can you share your thoughts on this?

April: Many people are skeptical…..I was one of them. However, I can only speak for the improvements I see with my son. I do know that my son only being 15 years old will have more improvements than someone older. I can’t say for sure, but with him being so young his body has responded immensely. My sister has had improvements, but not to the degree of my son. I always mention to others that ask about acupuncture that the risks are beyond minimal and there is nothing to lose. I took the leap of faith and I am so glad I did knowing I am fighting RP at every angle. I am also continuing to fight alongside the Foundation Fighting Blindness to find the cure to eradicate this disease.

IR: As someone who is fighting this disease from both ends of the spectrum, what advice do you have for people struggling with RP?

April: The best of advice I can give people is to take a chance on the treatments and testimonies you are hearing from other patients receiving the acupuncture treatments. Look at the amount of people that travel far distances to see Dr. Andy Rosenfarb. That speaks volumes!!! You don’t know until you try…………..I never assume anything in life. See for yourself.

 

Taking Charge of Our Eye Health

Written By: ingridricks - Sep• 20•14

View More: http://heatherballisonphotography.pass.us/ingrid-2013When I first started on this eyesight healing quest in early February 2013, I was at the lowest point in my life.

After waiting for six months to see a retinal specialist because I’d heard she was starting stem cell clinical trials, I was told that RP was an orphan disease and was too low on the priority list to receive funding to take promising research to the next level. Then she confirmed what I already knew – that my vision was down to three or four degrees of central vision with a strip of blurry vision in my outer pheriphery – and told me I had cataracts forming. Like every other eye doctor I’d visited, she said there was nothing I could do to save my eyesight and indicated I had only a few years left to see.

I cried for two days straight and then decided I was done with “no hope” and was going to fix my eyesight myself through naturopathy and specialized acupuncture.

It’s been a year and a half and instead of getting worse, my eyesight has improved. I now have so much peripherial vision that I recently played tennis with my daughters. I still have a donut of blindness around my central core – but it’s shrinking and I no longer worry about going blind. I know that if I keep doing what I’m doing, I’ll continue to see.

I feel like I’ve been given back my life. And I’m now on a quest to help others dealing with a degenerative eye disease say “NO” to “NO HOPE” and take charge of their eye health.

On Tuesday, September 23rd I’ll be leading a free eye health workshop at Des Moines Library in the Seattle area. The workshop is being supported by an artist grant I received from 4Culture. If you know anyone who might benefit, please share this blog post with them. Here’s to our eyesight – and our overall health.

4culture_colorFrom Powerless to Empowered: Five Secrets to Taking Charge of Your Eye Health

  • When: Tuesday, Sept. 23rd at 6 p.m.
  • Where: Des Moines Library -21620 11th Avenue S  206.824.606

Refusing to accept that there was no hope or cure for her degenerative eye disease and that she would soon be completely blind, author Ingrid Ricks decided to take charge of her eye health through a holistic approach that integrates naturopathy and Chinese medicine. Ricks will share her journey from victim to eye health advocate, read a short piece from her memoir in progress, and discuss the five things she’s been doing to maintain and improve her eyesight. She will also demonstrate simple eye exercises and acupressure points that have been proven to benefit eyesight.

Ingrid Ricks is an author, eye health advocate and teen mentor. Her memoirs include The New York Times Best Seller Hippie Boy and Focus, a memoir about her journey with the blinding eye disease Retinitis Pigmentosa. She is currently working on a memoir about her quest to save her eyesight, and is blogging about her journey at www.determinedtosee.com. Ingrid’s work has been supported by a 2014 Grant for Artist Projects.

 

Doubling Down on an Anti-Inflammatory Diet

Written By: ingridricks - Aug• 26•14

salad

I’ve got to admit, this whole diet shift is a hard one for me. I love all the foods I’m supposed to avoid – with cheese topping the list.

But I’ve learned way too much about the role inflammation plays in degenerative disease to keep dabbling on the sidelines. So, starting Now, I’m taking the next leap. I’m quitting wheat (totally quitting), quitting dairy and am even going to try to switch to tea from coffee. Sounds like I need to break my egg habit, too. But I’m going for it. For those of you who are interested, I found this great anti-inflammation diet outline by Dr. Andy Weil.

The good news is that we can still drink wine – as long as it’s red wine. And a little dark chocolate here and there is fine. Who wants to join me?

 

Treating RP: Think of It Like a Jigsaw Puzzle

Written By: ingridricks - Aug• 09•14

jigsaw-puzzle

Every week I receive three or four emails from people who are suffering from RP and want to know exactly how much my eyesight has benefitted from the acupuncture treatment I receive and the overall diet and lifestyles changes I’ve made.

“Do you really see improvements,” people will ask. “Exactly how much has your vision increased?”

The answer to the first question is ABSOLUTELY. But the second question is hard to answer because it’s not like pulling a string and opening a curtain. The visual improvements I’ve experienced have come in uneven patches — like a jigsaw puzzle that is slowly being dismantled so I can see through the holes where the pieces once were.

Imagine someone holding up a completed 5.000 piece jigsaw puzzle in front of your face. When I first started my eyesight-healing quest, that puzzle had only a few missing pieces in the very center –allowing me to see through that hole. There were also a few missing pieces midway between the center hole and the right and left side borders of the puzzle. The rest of the puzzle was a solid block. Now that puzzle is full of missing pieces. The hole in the center of the puzzle has gotten a little larger. And midway between the center of the puzzle and its right and left side borders, it looks like large sections have been dismantled, enabling me to see clearly in areas that were once blocked. The top of the puzzle is still largely intact, until you get to the top left and right side corners. Those pieces are now missing too—enabling me to see my husband’s entire 6 ‘2 frame if he’s walking to the left or right of me.

I still struggle to get around in the dark or in dim light, and there are still plenty of puzzle pieces blocking sections of my daytime vision. But the improvements I’ve experienced have been life changing for me. I no longer feel like a powerless victim waiting for this disease to strike again and take what’s left. I’ve taken charge of my eye health and now know I can effectively fight back and protect what’s mine.

The key, at least for me, has been adopting a holistic health approach that includes a combination of naturopathy and acupuncture.

  • I’ve revamped my diet – including daily green juicing, eliminating processed foods as much as possible and reducing my coffee intake
  • I’ve upped my cardio workout routine
  • I’ve reduced my stress
  • I’ve let go of negative energy
  • I’ve increased my intake of antioxidants and other key nutrients
  • I’ve adopted daily eye exercises and acupressure
  • I incorporate daily micro-current stimulation
  • I undergo periodic acupuncture and laser light therapy treatments designed specifically to treat RP

The acupuncture treatment is key for me. But it’s still only one critical piece of my overall eye health strategy. I’ve learned that if I want to save my eyesight, most of the work is up to me.

 

Emotional Trauma and Retinitis Pigmentosa

Written By: ingridricks - Jul• 21•14

Girl running down road

Six years ago I traveled to the Bay area to meet with Dr. Damon Miller, undergo detox and get started on his Better Eye Health home treatment program. I knew from my initial phone consultation with him that his treatment approach emphasized both physical and emotional health. But I was still surprised when he asked me to tell him about my childhood.

I was even more surprised—and embarrassed—when I immediately began sobbing.  I’d spent most of my childhood trying to escape the extreme religion and poverty at home by begging my freewheeling, vagabond dad to take me on the road with him to work as a tool hustler. I finally got my wish at the age of thirteen, when my mom remarried a man who used his religious powers as a weapon to oppress and abuse our family. I began spending my summers hustling tools throughout the Midwest and living out of cheap motels and rest areas with my dad. He became my lifeline and escape.  But the summer after I turned sixteen, he was violently arrested while I was with him.  A highway patrolman shoved a gun against his head and waved it within a foot of mine. Then he dragged my dad out of the car and took the one person I counted on away from me.

The trauma from my childhood was so great that I cried every time I talked about it. So mostly, I just kept the hurt tucked deep inside. But that day in Dr. Miller’s office, everything changed.  Dr. Miller pointed out two very powerful things to me.  First, he noted that I was still carrying around a huge negative energy charge inside of me from events that had happened to me as a teenager—which meant that I was still giving away my power. This bothered me. But it was nothing compared to his next words.  He said, “If you think this isn’t affecting your physical health, you’re crazy.”

The idea that carrying so much anguish inside of me could cause me to go blind was a huge wake-up call for me.  I decided to do whatever it took to get it out and was able to release the trauma by writing my story (now published in my memoir, Hippie Boy), and sharing it with others through radio interviews and podcasts.

Since that time, I’ve done research into epic genetics and the environmental factors such as emotional trauma and stress that can activate a faulty gene and trigger degenerative diseases. I’m convinced there is a correlation between my childhood and my RP. And it makes me wonder if the same holds true for some of you.

During my most recent treatment with Dr. Rosenfarb, he mentioned that he is discovering a similar correlation with many of the RP patients he treats. It seems that many of us have experienced extreme abandonment or trauma.

One of the most important things this healing quest has taught me is that emotional health is key to treatment success.  And I’ve discovered through my own journey and the writing program I’ve helped develop for at-risk teens that the only way to release emotional trauma is to get it out—either through writing or sharing it with someone.

So if what I’m saying resonates with any of you and you need a listening ear, I’m here. I’m also going to continue this discussion in the Facebook Group Determined to See and will be asking Dr. Miller and Dr. Rosenfarb to share their thoughts on this.

Here’s to getting healthy emotionally so we can heal physically.

 

Are Patent Laws Making You Legally Blind?

Written By: Natalie Watkins - Jul• 08•14

cid_38BAFD55-8953-4F12-8B91-0183413050A4 Natalie Watkins has become one of my favorite people in this solving-RP quest. She’s tried virtually everything to save her eyesight — from acupuncture in Canada, to a stem cell implant in Mexico, to Hyperbaric Oxygen Therapy in San Antonio. She’s got the kind of fight and determination we all need to beat this disease and when I told he about the nearly 20-year-old astaxanthin patent that’s blocked others from actively researching and discussing the benefits of astaxanthin for retinal diseases, she started sharing her own run-ins with what she calls “patent campers”.  I asked her to share her experiences here, in hopes that we can begin to generate awareness that will drive change.

By Natalie “Nat” Watkins

My best friend asked me yesterday, “So, why do you think you are still going blind? I mean, with all of the technology and capacity of humanity…Why has this problem not been solved?” I wish I could say that it is because the disease process is just too terribly complex.

But, then again, there are some smart people working on it. Really smart. Like beamed down from the mothership. People who could be making a lot more money as retinal surgeons in private practice. I mean, nobody tacks on that Ph.D to their M.D., so they can make more coin. Then they get to spend the rest of their careers fighting over five dollars in a sandbox with a bunch of other researchers.

Fun times.

What about the patients? Do we not volunteer to be guinea pigs for most any worthwhile project? Or, not-so-worthwhile project?

I know plenty of RPers who are willing to subject themselves to all sorts of humiliation in hopes of a resulting cure or treatment.

Is it because it is a rare disease? One that is not super sexy?

Closer. There is not a huge financial incentive to study RP.

What else?

Well, there is also an egregious practice that takes place. Regularly. It makes us about as attractive to biotech investment as Jabba the Hutt in a prom dress is to the average seventeen year-old male.

This practice, for purposes of a family audience, I will call “patent camping.”

What is it?

It is taking out a patent and then sitting on it. So, someone who is interested in researching your brilliant idea (or not-so-brilliant one) will have to pay you out in order to do so. Sounds fair enough. It is YOUR idea after all. Based on your research. You should get paid, right?

Sure. If you have funding to advance it forward. If you have an interest. If you can DO SOMETHING WITH IT in a reasonable amount of time. Otherwise you should let it go. It stops all kinds of creative work that could possibly improve the quality of real people’s lives.

And isn’t that the reason you got into this gig in the first place? That and a healthy dose of curiosity, I would imagine.

So, I would like to say it is just vitamin companies who patent camp. But, it is not. Awhile back, I was following the work of a Japanese researcher in the area of nilvadipine and RP. Nilvadipine is a type of calcium channel blocker.

And, the researcher who holds the nilvadipine patent is actually working on it. Trials are advancing. He is earning his patent by potentially serving patients.  Years ago, when I was looking into this drug, unavailable in the US, I learned of a patent on Diltiazem for RP. Diltiazem is also a calcium channel blocker. A few French researchers had camped on the Diltiazem patent. Back before the invention of the wheel.

Same class of drug as nilvadipine.

They had not moved any work forward. Dr. Berson (Harvard) published work disproving the use of calcium channel blockers in RP. Diltiazem, to be exact… with one dog. Before anyone understood different mutations.

Maybe someone before our Japanese nilvadipine researcher (currently in trials)  would have worked on it if the French researcher and friends had not kept camping on the patent even though they went on to live off of funding from other sources.

Oh well, I thought. Just one set of campers does not an epidemic make. Then I started learning about low level laser therapy and Retinitis PIgmentosa. I was encouraged by some work done by Eelis and Whelan at Wisconsin. And, Eelis has patented it for use in retinal degeneration. I do not have a problem with that as she is actually working on it.

Not a camper.

But I ran into another doc who was camping on LLLT for eye disease. A dermatologist. With a patent for LIGHT and eye disease? He took out the patent years ago. Then made a deal with L’Oreal to use LLLT for wrinkles. Did he let the patent for eye disease go?

Nope. He made himself a little fire and got out the marshmallows. Time for weanies, folks!

I wish, Ingrid, that your experience with this company was an isolated one. But, it is a systemic issue. I am not expecting anyone to be Jonas Salk, just let patents lapse when you cannot move forward with the work. New patent laws need to be put in place to protect the best interests of patients, with stricter time limits. As you stated, a possible RP intervention is not an Allen wrench. This is especially critical for those of us dealing with rare diseases which are already financially unattractive to the majority of companies.

Now where did I put that flashlight? Sure is dark out here in the campground….Think I just tripped over a couple of researchers eating beanie weanies.

I have to laugh. To keep from crying.

Nat

Natalie “Nat” Watkins lives in Texas with her husband and two children. In addition to being an avid reader, writer and pissed off blind person, she is a graduate student and enjoys pina coladas and getting caught in the rain, and is not into yoga and has half a brain She’s currently putting the finishing touches on her memoir, Crash Test. She can be reached at: Npendleton7@satx.rr.com

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