#BestAuntEver: The Story of a Family-Centered Care and Empowerment

At the American College of Rheumatology Conference in San Francisco, I attended a session on “Empowerment through the family-centered care approach.”

  reprinted from http://www.thisaslife.com/lifestyle/best-aunt-ever

At the American College of Rheumatology Conference in San Francisco, I attended a session on “Empowerment through the family-centered care approach.” I listened to the various programs offered by a children’s hospital and saw a number of photos of doctors at events in the park with their patients and families. But really, the best teacher for me on this topic was the aunt of a girl named Amanda*.

Amanda’s aunt saw her niece was acting different and in pain, but her parents made excuses why she was not active. They didn’t want to believe their daughter was not well, so they often told themselves she was just lethargic or simply unmotivated.

I’m a dad. I get it... with every fiber, I want my children to be healthy. My children have less than a 20% chance of having AS. However, the odds of my having AS was much less, so that’s not comforting for long. It’s always in the back of my mind. Yet, when my child has an ache, I look for a mechanical cause. I console myself that they are in pain because of an athletic game or strenuous activity.

Amanda’s aunt is a hero. She’s a detective. She epitomizes empowerment. She listened to Amanda and began asking questions. She searched symptoms on ‘Doctor Google’ and foundwww.spondylitis.org . She even called the Spondylitis Association of America (SAA) 1-800 phone line and we spoke on the phone. She was extremely frustrated with the situation and couldn’t watch Amanda – at the prime of her life – living in such pain. She took Amanda to a rheumatologist from SAA’s directory of spondylitis specialists – and later drove 40 minutes to come to an educational/support group to meet others with spondylitis and asked us a lot of questions. After Amanda was diagnosed, the family started coming to meetings with Amanda. At one meeting, we had Amanda’s mother, father, both brothers, uncle and, of course, her aunt. They didn’t participate much other than to say, “We are here for Amanda, whatever she is going through we are here to support her and learn.” They even brought homemade refreshments and stayed after to help clean up. A couple years after that first phone call from Amanda’s aunt, Amanda still comes to meetings when she can get off of work. She drives in alone, but I’m sure when she gets home, she’s understood and supported by her family in almost every way possible. Beyond this, she has the tools to manage her AS and her life.

And to think, it all started because Amanda had a strong advocate in her family. #BestAuntEver

*True story (names have been changed)

This article was written by Richard Howard, with help from the resident experts at ThisASLife.com. A social site helping the whole AS community to: Learn. Share. Inspire. Discuss.

My Experience at the SPARTAN Conference

My Experience at the SPARTAN Conference

By Richard Howard, MBA

 


Richard Howard and our 2014 award recipient, Pamela Weiss, MD.

A few weeks ago I had the opportunity to attend the two-day long SPARTAN conference in Denver. Comprised of spondylitis clinicians and researchers, SPARTAN (the Spondyloarthritis Research and Treatment Network) meets each year to discuss new research and to hear abstract presentations from Fellows and SPARTAN members.

 
While at the conference, I heard first hand from numerous researchers how SAA’s funding is advancing spondylitis research. Just this past year, in fact, SAA awarded three $20,000 grants to early career researchers focusing on spondylitis - both to recognize their work, as well as to encourage and enable them to continue their research. The award - the SAA/Jane Bruckel Early Career Investigator Award in Axial Spondyloarthritis - started several years ago, and as of now has been awarded to seven promising early career researchers.  I’ve met them all and they are brilliant.

My favorite moment of the conference would in fact be a brief interaction in a quiet corridor with one of our past awardees. 
 

The incredible, greatly respected researcher in spondylitis was walking quickly out of the hall where she had just presented her latest genetic research on spondylitis. We exchanged greetings as we hurried onward and before we parted ways she said, “I’m very grateful for the SAA. You guys got me started in spondylitis all those years ago.” Our encouragement and nudge toward spondylitis had certainly paid off - big.



Drs. Michael Weisman and John Reveille at a past SPARTAN meeting.



 I also had lunch with a group of young researchers from around the country who were anxiously getting ready to present their work to a room of established researchers. One of them may one day be nominated to win our award. I learned that most of these gifted doctors and researchers hadn’t really decided what to focus on in their careers. I grabbed the opportunity to let them know why work in spondylitis is so critical for so many people. The reality is that spondylitis is woefully underfunded and under researched, and since it’s not well known, young researchers have to learn about the disease and its impact.

As people living with spondylitis, we have questions and need answers. The pace of progress is literally painfully slow for people with spondylitis. However, in my lifetime, I’ve seen ineffective and hazardous “treatments” routinely prescribed be disproven, seen things I know - in my gut - to be helpful, confirmed, and new treatments discovered. SPARTAN also came into existence in my lifetime, with SAA organizing its first meeting in 2002, and carrying the group under its fiscal umbrella for 11 years thereafter.

 
 

We are at a very exciting point in research. The costs to do genetic analysis - not just on human genetic codes but also on our microbiome system - is coming down. This is enabling researchers to gather and analyze greater amounts of data to better study questions like: why do so many people get spondylitis; why do some people’s disease progress so quickly and painfully; and most importantly, what can be done to prevent and interrupt the disease.

I’m grateful for the work that has already been done and hopeful for the future.

 

 

We Count Things That Are Important
Originally posted at Walk Your AS Off

We Count Things That Are Important

May 29, 2015

Did you count your steps today? Are you more mindful of your steps now that you have been counting them?

This is weird, but I count people in a room. It’s a habit I was taught. I started working with kids when I was fourteen. As a camp counselor, youth groups counselor, teacher and as a director of informal education and camps, when you’re loading the bus coming back from a beach trip, you better know that you have everyone. When you’re working with teens on a camping trip, you better not be missing two at any time. I’m also pretty good at counting large rooms quickly.

Last time I spoke in front of a room with a thousand people, I did some quick math.
Odds are that at around 80 people in the room are HLA-B27 positive. Probably eight of them have AS. Among the 960 others, two probably have AS. So, at least 10 people in the room had axial spondyloarthritis (axSpA). If the people in the room had an average of 150 friends, then the room was friends to 1,500 people with ax-SpA and loosely connected to three times that.

There are around 41 genes, in addition to HLA-B27, that are associated with spondylitis. We thought a cure for AS was around the corner when HLA-B27 was found to have such a high association with the people that have the disease. I don’t believe any rheumatic disease has such close association to a specific gene. That was an exciting time. Back when docs waited for irreversible damage to be visible on xrays, it could take nearly 10 years – or longer- for people to be diagnosed with AS.

When kids had pain, they were told it’s growing pains. As we now understand, some people with non-radiographic spondyloarthritis (nr-axSpA) have all the pain and never fuse. Those people would be misdiagnosed with a long host of diseases from Fibromyalgia to psychological disabilities; some of us had unnecessary surgeries. HLA-B27 hasn’t given us a cure (yet), but it can and has reduced the time it takes to be diagnosed.

The close association of HLA-B27 with AS often means the more HLA-B27 there is in a population, then the more people develop AS. If you could wipe HLA-B27 off the earth, would you? Should you? I understand it’s a tempting thought.

Clinicians and researchers suspect that people positive with HLA-B27 do better against viruses than those that are negative. That may include AIDS. I understand that this class of genes (HLA) are responsible for detecting foreign substances and triggering the immune system. Drug molecules, bacteria, viruses, tumor cells and immunity. It’s apparently used as the basis for organ transplant rejection. Are we here today, because an ancestor with a gene – that made us susceptible to spondylitis – survived an epidemic? The more we know about genes and diseases, the sooner we can get personalized medicine. We will stop asking doctors “What are the odds of…?” and start asking “What will happen to me?”

Not only do researchers come to SAA looking for participants to understand, treat and cure spondylitis, researchers also come to SAA looking for people that are HLA-B27 positive for other conditions.

If you want to advance research, please join SAA. Your information will be kept confidential, but we will let you know of research opportunities and of the research results at

www.spondylitis.org

 

To learn more about the benefits of becoming an SAA member, please visit 

http://store.spondylitis.org/productlist_sm.aspx?department=1

Why Walk?

Why Walk?
From WalkYourASOff

May 12, 2015

Why walk?
Walking can be really tough. There was a time when my AS felt horrible after walking, even high impact activity such as running felt better. When you have a spondylitis disease, any and all activity feels completely out of the question at times. There are days when I force myself to do exercise and I’m still a ball of pain. Flares can be very stubborn.

If it feels so bad to move, why do it?

Because it feels worse not to. Every time I’ve given myself a break from exercise, it’s made me feel worse and flares last longer.

For many of us, there will be days in May that we will not want to walk. We need to listen to our bodies. If you are anything like me, then I’d highly suggest doing some activity. On the really tough days, deep breathing and laying flat on the floor counts. On other days, do what you can. For WYASO, use a conversion table to convert the activity to steps. Btw, bowling on the Wii is 61 steps/minute.

‘Dr. Google’ will give you a thousand results of the benefits of exercise. Refine your search to spondylitis and exercise and you will see peer reviewed, evidence based studies specifically linking exercise with better outcomes for people with spondylitis. For those of you with osteoarthritis, it helps that too.

Spondylitis treatment has two major components: medication to control inflammation and exercise to maintain mobility, strength and function of the joints involved. Exercise is something to discuss regularly with your doctor.

Exercise is Essential is the title of Chapter 5 of SAA’s Straight Talk On Spondylitis book.

“Exercise is an integral part of any spondylitis program… Participating in sports and recreational activities is part of the management of spondylitis. A proper level of fitness and activity helps decrease pain and stiffness.

Activity also nourishes bones and consequently helps combat osteoporosis.” This book is designed to provide information necessary to manage spondylitis and a good chunk of it details exercises. There is a step-by-step guide and a handy poster.

If you’re a goal oriented person, set your intention by creating a physical ‘wish list’. Perhaps you want a healthy cardiovascular system, increased strength, improved daily functioning, increased resilience, reduced fatigue, reduced depression, improved posture, improved flexibility, to have fun with movement, improved confidence and self image, etc.

For me, I’m concerned with increased risk of heart issues with long term inflammation, so cardio is important. I’m also concerned about susceptibility to fractures when I age, so maintaining balance skills is important. Function and quality of life is important, so everyday strength and range of motion is important. I cycle, lift light weights and practice yoga. I also find being a part of a proactive, informed and supportive community to be beneficial. So, WYASO is important.

If you still need a reason to walk then walk because you can. Make it a physical celebration of what you can do. Spondylitis affects people differently. Some people in our community are not able to walk in May. If you can, walk and add a prayer for those that can’t.

SAA has additional resources on exercise:

• Physical Therapist and fellow spondy, Sturdy McKee provided a wonderful overview of physical therapy for spondylitis (free) http://www.spondylitis.org/press/news/630-la-seminar-video.aspx
• SAA’s exercise DVD is another excellent resource for exercises specifically for people living with spondylitis (fee) http://store.spondylitis.org/productlist.aspx?department=37
• SAA’s brochure The Role of Exercise in Spondyloarthritis (free) http://store.spondylitis.org/productlist.aspx?department=3

I’m as mad as hell and I’m not going to take it anymore!

Author: Richard Howard/Friday, April 10, 2015/Categories: Weekly News

 

Frankly, this isn't something that I get "mad as hell" about. Perhaps I should.

 

Decisions are being made about which medicine you have access to. It's not based on science. It's not based on evidence. It's not your doctor's decision. You do have a choice. Your choice is 'take it or leave it.'

If you can afford to pay nearly $20,000USD a year for medicine, then you have more choices. 'Advocacy' and 'public policy' doesn't usually stir much anger or emotion from me. Perhaps they should. In states across America, elected officials are voting how to handle biosimilars (think generic for TNFis). We know that some TNFis work well for some people, some do not. Some only work well for a while. My point is that each TNFi is different and each biosimilar will also be different. Biosimilars, along with other types of medicines in the pipeline, is a chance for us to have lots of choices.

Choices are 'chances' for feeling better. Chances to have a better life.

Don't let your elected officials or some health insurance back room deal limit your choices. This is very real. In January, thousands of people received letters from their insurance company stating that their insurance only covered 1 of the 5 TNFi available. The patient was welcome to stay on their current TNFi and pay out of pocket for the entire amount.

Some States are deciding that after you and your doctor decide on a medicine, it's then okay for it to be switched at the pharmacy without telling you. It can be switched to a medicine that was tested for Crohns disease, but not for Spondylitis. It can be switched without telling your doctor.

A good number of people in the pharmacy retail industry think the name of a biosimilar should be the same as the original because it's easier for them that way. It's nearly impossible for researchers to know what works and what has side effects.

And don't even get me started on why 'specialty tier' copay prices were invented. How is it fair that some meds are cheaper to use than others? Patients didn't choose which disease to get or what type of medication is effective. Isn't that the point of health insurance, to spread the risks and costs? Perhaps I do have the potential to be 'madder than hell'. Are we going to sit back and take whatever is more profitable for the insurance company?

A few years ago, Spondylitis on a medical record meant that the person was excluded from being able to purchase private medical insurance. That changed because of people advocating for change.
I suspect the vast majority of politicians have never heard of Spondylitis. They certainly won't know there could be a difference between one TNFi and another.

It's time to step up! So, even if you're not mad as hell, let your representative know how you feel. Even if this doesn't affect you personally, do it for your community of spondies who need to be in charge of their choices. Join SAA in being an advocate for people living with spondylitis.

*Originally written for the Walk Your AS Off blog.

 

Spondylitis Awareness Matters – Instagram/Twitter Campaign

Spondylitis Awareness Matters – Instagram/Twitter Campaign
From WalkYourASOff

April 8, 2015

Spreading awareness for a disease helps in all sorts of ways. Ask the ‘ice bucket’ people. For Spondylitis, awareness improves lives. Everyone ‘walking their AS off’ already understands this and has their own story to share.

April is Spondylitis Awareness Month

Saturday, May 2, 2015 is World AS Day

Please join the Spondylitis awareness campaign this month 

and have a chance to win an ipad mini! 

 

In my position at SAA and as a support group leader, I’m exposed to a lot of reasons why awareness matters.

What happens when people are unaware?

1. People ‘self medicate’ with alcohol and drug abuse.
2. People break their neck with a roller coaster ride (or a ‘simple’ fall).
3. People have permanent vision damage including loss of eyesight.
4. People are considered whiners, lazy & antisocial.
5. People think it’s normal ‘growing pains’ when a child on the floor crying from hip pain.
                                    
6. People have spine or hip surgery, merely to have the pain return.
7. People (docs) mistakenly diagnose patients with mental illness instead of referring to a rheumatologist.
8. People (docs including chiropractors) are confused why their patients are not getting better.
9. People (radiologists) don’t notice ankylosing spondylitis on the x-ray and MRI.
10. People forget to donate to this pretty common, painful and often permanently disabling disease.
11. People are undiagnosed to the point that it’s too late for treatments to be effective in stopping permanent damage to the spine.
12. People don’t know why they are angry and short tempered.
13. People may never fully trust doctors again.
14. People lose out on having close, long term relationships with their parents, spouses and children.
15. People don’t know that their digestion, vision, small joint pain, back pain, fatigue and limited range of motion, osteoporosis, sciatic pain, heart and lung issues are all related.
16. People feel isolated, alone, depressed.                    
17. People don’t know what can be done to feel better.

Seronegative spondyloarthritides, more commonly called spondyloarthritis or simply spondylitis, refers to a group of auto inflammatory diseases that primarily affect the spine and other joints.

 

The CDC estimates at least 2.7 million adults in the USA have axial spondyloarthritis. That’s not rare. Men and women get this. Rheumatologists diagnose and treat this disease. There is a genetic component and so there is a tendency to occur in more than one family member.

 

There is no definitive blood test and diagnosis is not simple. Incredibly, people can be relieved to hear that they have this painful, incurable disease… because they have been living in pain without any medical answers for years and years.

 

Common factors used to diagnose spondylitis include:

• Onset usually under 45 years
• Pain persists for more than 3 months
• Back pain and stiffness worsen with immobility, and eases with exercise
• NSAIDS usually help

A lot of progress has been made in the 30 years the SAA has been around. There is a network of support. There are researchers improving lives and seeking a cure. There is reliable, evidence based information in a magazine, website, email newsletters, at seminars and just a phone call away.

There is advocacy work being done. Visit www.spondylitis.org for more information.