Patient to Patient Symposium Set for Southern California

Patient to Patient Symposium Set for Southern California

by Ed Coghlan

“Patients with chronic illness often can learn more from other patients than they do from their doctors.”

Dr. Susan Nyanzi should know.

This Ugandan-born British-educated chronic disease management specialist has lived the life of a patient long before she turned to trying to help.

She was diagnosed with Scleroderma when she was 7, developed fibromyalgia from an auto accident and suffers from Celiac disease.

She has also developed a unique two and a half day conference called “The Patient to Patient Experience Symposium” to be held November 18th-20th at the Terranea Resort in Palos Verdes, California.

“We believe that people with chronic conditions can lead a more satisfying life by being more self-determinant,” she said.

Dr. Nyanzi pointed out that genetics influences about 20% of the condition and 80% is lifestyle related.

She believes the Symposium, which hopes to empower and educate those living with chronic conditions, has particular value for the chronic pain patient.

“I know from personal experience that pain shouldn’t be defining you as an individual,” she said. “We can learn how to use other means of reducing pain and improving the quality of life.”

The Symposium will focus on a wide range of topics including

  • nutrition
  • exercise
  • improving quality of life
  • how to advocate with local and state governments
  • psychotherapy
  • estate planning
  • starting an at home business

Health care providers will also be invited so “they can learn how to help patients manage their chronic conditions.”

Patients and providers will be recruited from both national Scleroderma Non-profit organizations, other autoimmune related foundations, professional organizations and the committee’s contact lists. Email blasts, personal invitation and social media will additionally be used. They are targeting 200 – 300 attendees with at least two-thirds or more of those being providers.

“While we wait on a cure, let’s focus on those currently living and show them how they can better manage their condition. To help create such an environment, partnerships across disciplines (medicine, public health, integrative management, advocacy), at the local and national level are key to sustainable networks.

In case you’re wondering–and we were–the cost to the participant is $150 which includes 2 night stay and meals, a huge discount to the patient, a great value for such a venue.

Here’s a story the National Pain Report did on Dr. Nyanzi when she was preparing to speak at the 9th annual Women in Pain Conference in Los Angeles in September.

If you’re interested in attending the conference, click here.

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Authored by: Ed Coghlan

There are 6 comments for this article
  1. Adele Casden at 7:31 pm

    I have taken the Fentynal patch for 10 years. It allowed me to live a somewhat normal life. Now they are saying that these medicines should be denied people who need them to live a normal life. This is non-sense, & all doctors know it. The people dying from opiods are drug addicts, taking the medicine to get high, not to stop pain. People who need pain medicine to live without pain, are being treated like criminals. When people in pain, recover, they can’t wait to stop taking the opiods they needed. Studies have proven this fact. If the government is worried about drug addicts, why don’t they start monitoring those who take medicine for pleasure, & stop the gang warfare, where young gang members are fighting over territory to sell drugs. Register drug addicts, or offer them the chance to get rehabilitation help. Our government has lost its common sense. There is no common sense in depriving patients in pain, the fight to have pain medicine.

  2. Krissy at 7:27 pm

    I believe this conference is a good idea. Exercise looks to be only one component. The results from this, with so much patient involvement, can only give us all information that is at least research that hopefully can be put to good use, good or bad. I also live in chronic pain 24/7 and it is only somewhat relieved by heavy meds: Fentanly, Oxycodone and Rx Ibuprofen, plus more. I use a large back brace (the only one approved by Medicare), a wheelchair when needed, crutches and a lot of my bed. But I like to hear what people do and go through. I realise RSD is different than my maladies: RA, Lupus, DDD, Fibro, ME/CFS and inflammation issues from thyroid disease. But listening to anyone’s stories and outcomes is helpful to at least some. I can type laying down like a champ, but my only exercise is to get my dog outside a few times a day — even in excruciating pain — so I am doing something and don’t lose her. Let’s not judge the outcome before the results. I wish I could attend. (I had a very good friend with advanced scleroderma and worked for her for six months. It is an extremely painful and physically limited disease.)

    I say, good for Susan! And I wish I could attend, but a recent hospital stay, two ambulance rides and the work of many healthcare professionals, high-end tests, a home remote heart monitor, new meds and a host of crazy-expensive supplements have left me with a pile of stress that will bankrupt me. I dared to open just one of the stack of bills today and just that one is enough to know that at 63 I do not get to relax and enjoy retirement. I just have to plug away fighting insurance and mistakes others make every day. Five miles from the ocean and I’ve only been there three times. I want to hear more about what other people are doing. Nutrition is my biggest interest. I am losing a pound a day ( hit 38 today) and trying to find things I can stand to eat without any toxins. It’s tough and expensive.

  3. Susan Nyanzi at 5:35 pm

    Hello Joan and Tracy
    Hope this finds you well I understand your hesitation to not exercise but guess what exercise is good for RSD patients as well, anyone with a chronic conditions exercise is 10 times better than any medication, it produces better sustainable results compared to medication, it improves on quality and enjoy of life. The added benefit, you don’t have to worry about side effects. I know about RDS because I have friends with RDS. The 5 types of pain that RDS patients have Scleroderma patients also have, both conditions are under the same umbrella called Rheumatic conditions. My proactive warrior ladies with RDS, (I’ve gotten to know a large number now thanks to the Women In Pain Conference, that’s hosted by For Grace) found they managed RDS better when they exercised. When they missed a couple of days the pain came right back, they get grumpy and felt miserable. For example one friend with RDS pole dances just because she can and another swims most days of the week because she feels better when she swims. These are just a few examples. About the grumpy and miserable part? exercise can fix that as well. There are physiological pathways that show how exercise helps, with a wide range of things. I can gladly go over them in detail, but experiencing it is very different than talking about it. At the conference we will actually experience it then explain how it works.
    One more point, in addition to being good for the body exercise is also good for the mind, it increase positive thoughts, it decreases the perception of pain and the actual intensity of pain. At the conference we will talk about this in detail and empower attendees to try other options. In addition to exercising, hypnosis has also been shown to lower pain. I must say the conference is for those that are ready to make changes and want to make changes. We will empower and show attendees how they can be drivers of their own health, how they feel and how they manage pain so it doesn’t define them as a person. Now the person should want to make these changes. Oh did I mention there will be RDS patients presents some will even present.
    Hope that helps Dr. Susan

  4. Dan at 2:42 pm

    I have fibromyalgia and i fell 15 ft braking my foot and back 9 yrs ago and have compression deformities L1-L4. Thru 20 yrs of suffering first with fibro then the accident added the icing to cake. I was a atlete all my life( football, baseball, then after highschool i got into bodybuilding. Then i met my wife whos dad has a farm that i helped run. I can barely spend a hour on the tractor cause my back and i try to help with hay but cant get out of bed the next day. Ive tried p.t., lived at chiropracter, been to dr gallagher ( natural medicine doc) took all his pills and went on his diets. Had chelation therapy. Been on every med known to mankind with no response. At my wits end i was sent to a pain dr. She found the right opiod and yes these were last resort. Then she/he got me on right dose. I had a quality of life until they attacked dr’s and chronic pain patients. And my meds were cut now im in pain every day. I love to hunt and it kills me not to be out enjoying gods wilderness hunting. Tell me how thats not supposed to depress you. Make you wanna give up. For the first six years i went to tons of doctors for help never mentioning opiates. I told them what i was diagnosed with and let them try to help me. I was ready to give up and my dad said its a sin you cant they will find something so i suffered till they did. Now i believe its a sin to leave a person in pain and ignore their beg for mercy. To not take their meds away so they can have a quality of life. We are only on this earth once. Aint it fair for everyone to have a life while we are here. To have people turn their backs on people who didnt ask for a life of suffering. To not be cinsiderate and compassionate makes me sick. Addicts probabally never dealt with chronic pain yet their the sufferers. Makes me sick.

  5. Joan Hamm at 12:45 pm

    Oh NO!!! Exercise… Your therapy topic is outragious for people with rare RSD CRPS disease. People will die if forced off medicines that help them. We need a miracle cure by more focus on pain disease!!! That today need medicine to survive. The government and you don’t talk to RSD patients that suffer horribly!!!! A meeting with many of these suffering people is necessary. To find the right way to go…. 😢😢😢😢

  6. Tracy at 5:54 am

    Sorry Dr., you are willing to give up your rights to live pain free, I for one am not and this controlling Democratic presidential has not the right to deprive me of a life free of pain.