Thriving with Functional Medicine

Joanne Speaking at Scleroderma Conference

Joanne Pappas Nottage, a Functional Medicine Certified Health Coach and speaker at our April 2017 Patient Education Conference, spent years struggling to get correctly diagnosed and treated for her autoimmune issues. Today, she’s helping people blend traditional western medicine and functional medicine to get and stay healthy. This is part one of a four part series from Joanne on functional medicine.

You probably already know that autoimmune diseases like scleroderma can be confusing and hard to diagnose and treat. What you may not know is that there are so many options you may not have been exposed to – including Functional Medicine. I understand this particular struggle very well. I myself have received multiple diagnoses over the years and my path to better health was a stressful, frustrating and lonely journey, despite being blessed with a loving husband, family and supportive friends. I didn’t know what was wrong, and wondered if it might all be in my head. Sound familiar?

Joanne’s story

My symptoms began in childhood, when I went from being active and energetic to pale and easily tired. Eventually I was diagnosed with anemia and later with my first autoimmune disease, rheumatic fever, a condition so serious it damaged one of my heart valves and forced me into open-heart surgery in adulthood. I’m very grateful for the western medicine doctors and technology that saved my life!

Throughout my 20’s, I developed other symptoms—allergies, asthma, migraines, weight issues, poor sleep, rashes, hives—then was diagnosed with my second autoimmune disease, alopecia, which caused extensive hair loss. The specialist I saw prescribed cortisone injections, topical steroids, oral prednisone (exacerbating weight gain!) and even clinical trials. I had some hair regrowth but then lost it again.

Later I was diagnosed with granuloma annulare, Hashimoto’s thyroiditis and antibodies for a mixed connective tissue disorder—all autoimmune diseases. Unfortunately, it’s not unusual to develop multiple autoimmune diagnoses, since many treatments address our symptoms but not their underlying causes.

Finding Functional Medicine

I pursued the path of conventional western medicine for years with at least 10 different doctors! I was a motivated patient and worked hard to get well, but still my overall health continued to decline.

Calling on my formal training in science, I asked my doctor if my symptoms might somehow be related. If we could determine the root cause, couldn’t we treat it instead of the symptoms? She told me that working with a specialist for each symptom was the best I could do. This frustrating response finally led me to explore alternative approaches to my health, to discover Functional Medicine (FM), and to feeling better than I have in decades.

I am a strong believer in western medicine, but in some situations I learned it is not enough. FM provides a strong complement to western medicine, taking a systemic approach to the whole body while addressing the underlying causes and empowering patients to be active in regaining their health.

What is Functional Medicine?

FM incorporates the latest in genetic science, systems biology and an understanding of how environmental and lifestyle factors contribute to the development of disease. An FM practitioner maps a patient’s story onto a timeline and the FM clinical matrix, does a physical exam, utilizes advanced lab testing and explores the interaction among genetic, environmental and lifestyle factors that can influence complex chronic illness.

FM approaches autoimmune as a disease of the immune system, not of a specific organ, in which a shared biochemical process connects all autoimmune conditions. FM works to understand what triggers the immune response, then to systematically eliminate the triggers, correct imbalances and restore function. This approach changed my life and has worked for many with scleroderma too!

In upcoming posts, I’ll share more about the factors that FM addresses, and how you can start taking control of them and your health!

VIDEO: What Should I Eat?

Our fall Patient Education Conference welcomed Registered Dietician Beth Doerfler. She answered your nutrition questions as they related to scleroderma, such as:

– Someone who I know that had scleroderma said that she is feeling much better on gluten free diet. Is there any scientific basis to it?
– Besides sugar, white carbs and saturated fats, what are foods to avoid and reduce inflammation?
– What supplements help gain energy? What are the best juices to fight inflammation? How does dairy effect digestive tract?
– What are the benefits of vegan and gluten free diet? What are the implications of low iron ferritin level?
– Why my child is not gaining weight even if she eats whatever she wants?
– What is the best way to obtain calcium if you are lactose intolerant?
– What is the best way for someone with scleroderma to lose weight?
– What are anti-inflammatory foods?

Beth Doerfler is also currently contributing to our blog series dedicated to managing nutrition and wellness with scleroderma. Check out her most recent blog post here!

We encourage you to take advantage of our other educational online resources on both YouTube and SlideShare. Follow us on Twitter, Instagram, and Facebook for up to date Greater Chicago news!

Bethany Doerfler MS, RD, LDN
Northwestern Medicine

Presented at the Scleroderma Patient Education Conference, Saturday, October 15, 2016. Hosted by the Scleroderma Foundation, Greater Chicago Chapter and the Northwestern Scleroderma Program.

http://www.scleroderma.org/chicago

VIDEO: Scleroderma and Stimulating Immune System Response

This past October, the Scleroderma Foundation Greater Chicago Chapter was pleased to welcome Dr. Jaehyuk Choi to Northwestern for our Patient Education Conference. Dr. Choi’s background includes both medical and post doctoral study at Yale University, and he is now an assistant professor at Northwestern University in dermatology, biochemistry, and molecular genetics.

Photopheresis is recommended by medical professionals in order to treat patients with immune system disorders by stimulating immune reactions. The process is simplified to collecting white blood cells and exposing them to a photosensitizer and ultraviolet radiation, resulting in an altered function to stimulate immune response that will fight the development of immune diseases like scleroderma.

His presentation on Extracorporeal Photopheresis includes a brief overview of Scleroderma Pathophysiology and Photopheresis, and continues to delve into clinical studies, the ideal patients for these treatments, and how Photopheresis works in scleroderma and other diseases.

We encourage you to visit our online resources on YouTube and SlideShare. You may find more videos and slideshow presentations from this past conference in October, as well as other conferences.

Our Spring Education Event will be on April 22nd in Oak Brook, IL! Check out scleroderma.org/chicago for more information and to keep updated with registration availability.

 Dr. Jaehyuk Choi

Assistant Professor
Department of Dermatology
Director, Extracorporeal Photopheresis Unit
Northwestern University

Presented at the Scleroderma Patient Education Conference, Saturday, October 15, 2016. Hosted by the Scleroderma Foundation, Greater Chicago Chapter and the Northwestern Scleroderma Program.

http://www.scleroderma.org/chicago

Improving Your Health in Three Easy Breaths: Intro to Yogic Breathing

Yogic breathing, or pranayama, is fundamental in the practice of yoga. Its overarching goal is to increase energy in both the body and the mind. It has many benefits that include, but are not limited to, feeling more calm and centered, better quality of sleep, and helping mitigate intense emotional feelings.

Air intake is essential for life, and the brain responds to the respiratory system with extreme urgency. Because of this urgency, the benefits of yogic breathing can have an overall positive effect on your health. These breathing practices can reduce feelings of anxiety, depression, and increase the amount of oxygen brought into and distributed throughout the body.

Dr. Sundar Balasubramanian is currently studying and researching at the Medical University of South Carolina (MUSC). He is a Yoga Biology Researcher who believes that yogic breathing can improve your daily life and should be practiced by everyone. Dr. Balasubramanian was a speaker at the National Scleroderma Foundation patient education conference, and shared some helpful insight into yogic breathing techniques. Refer to Dr. Balasubramanian’s discussion and demonstration of  yogic breathing practices in the videos below to learn how yogic breathing can make a difference in your overall health.

 

 

Sources: http://www.huffingtonpost.com/kripalu/yoga-practice_b_4762303.html

Spotlight: Valarie Hutchison, Support Group Leader, Green Bay/NE Wisconsin

Recently we interviewed Valarie Hutchison, one of our support group leaders! She talks about the benefits of joining a group, advice for patients and finding inspiration. She invites you to get involved if you are in the Green Bay/NE Wisconsin area. If you are interested in joining this support group or learning more, contact Valarie at hutchresource@gmail.com.

SF: Why did you decide to lead a support group?

VH: The former leader, who was terrific, had some big changes in her life which included a move so it looked like the group would disband.  Even though I had only been diagnosed with scleroderma for about a year, I couldn’t let that happen.  When this disease was first mentioned to me as a possibility, I began to do my own research and I was terrified.  Like a lot of people, I didn’t find knowledgeable doctors locally. I did find this local support group and reluctantly went to my first meeting. I walked in to find two women who educated me, guided me and gave me their opinion that I had scleroderma (which was later confirmed at the Mayo Clinic).  At last, the chaos in my mind was quieted, and I could move forward to get a diagnosis and start treatment.

SF: When and where does your group meet?

VH: Our group meets in a lovely room with a beautiful view at the Bellin Family Health and Wellness Center at 3263 Eaton Rd. in Bellevue WI, 54311.  We meet the second Wednesday of every month from 1:00PM to 3:00PM.

SF: What do you look forward to the most in being involved with this group?

VH: The most gratifying thing for me is the newcomer to the group who is looking for the understanding that only someone who has scleroderma can give. The emphasis of our group is supporting each other and giving each other what we need. It is very free form.

SF: Aside from the support group, what resources would you recommend for patients and caregivers in your area?

VH: I always recommend the Scleroderma Foundation and Inspire.com for the discussion boards.  Both are good resources. If you don’t have your own computer, you can use one at the library, and they have people who can help you navigate the internet if you’re not a tech geek.

SF: How do you find inspiration?

VH: There are days that the fatigue and pain get the best of me.  I have Common Variable Immune Deficiency (CVID), a primary immune deficiency and, for the last two years, Scleroderma. Brought with the scleroderma was the standard Raynaud’s with the deluxe package: autoimmune thyroiditis, Sjogren’s, and, just recently, Addison’s disease.  I’m fortunate because I live alone (with my dog, Stewie) so there is grass to cut and snow to blow and everything that taking care of a home entails.  If I had someone else to do those things for me, I would not be as well as I am. I would certainly not be as mobile because I have tendon friction rubs in most of my joints.  I can be a whiner at times, but since there’s no one here to listen I have to pull up my socks and do what needs to be done.

SF: Can you tell us a few interesting facts about yourself?

VH: I’m a mother. I have two sons that are the reason I’m in Green Bay, WI.  They’re great people- the kind of people I’d want to know even if we weren’t related- and then two grandsons.  I never feel so un-selfconscious as when I’m with those kids.  They cheer me up, make me feel better no matter what.

I worked in the mortgage industry for 20 years before it became so greedy.  I felt good about helping people by putting them in the loan product back then it was quite gratifying and I miss that.

I learned to surf when I was 55 and sailed the Atlantic as first mate on a 43 ft. catamaran when I was 57.

SF: Do you have any words of advice for other patients and caregivers?

VH: Educate yourself first and foremost.  Understand your disease and your test results.  Always, always get copies of test results, radiologist reports and discs of any MRIs or scans and keep them together for the continuation of your care.  Make sure that you understand them. Go to websites like John Hopkins or the Scleroderma Foundation to learn more.  Seek out a support group in your area so that you can talk to people who really understand.  If your doctor isn’t supportive and knowledgeable go to another.

Leg “Cramping” Your Style? Ask the Dietician.

At the Patient Education Conference held at Northwestern University in Chicago on October 15, 2016, Registered Dietitian Beth Doerfler answered patient questions regarding nutrition and scleroderma. If you have any questions, please email us at gcchapter@scleroderma.org.

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Q: What are the foot and leg cramps I get every night from and what can I do about them. I have tried using drinks with additional potassium like drip drop but there is a lot of sugar in it and that gives me diarrhea too.

BD: Leg cramps can really interfere with a good night’s rest.  Good sleep is essential to battling fatigue.  To combat leg or muscle cramps, we need to consider both Potassium and Vitamin D.

Vitamin D helps absorb calcium which your muscles use to contract.  Vitamin D deficiency can make muscle cramps worse.  If you have not had your blood levels of vitamin D checked yet do talk with your doctor. Most Americans need approximately 800 IU vitamin D daily and you may need more if your blood levels are very low.  Vitamin D is difficult to get entirely from foods and often we have to rely on some amount of vitamin supplements as well as a diet rich in fortified foods.

If you are looking to eat more potassium I have included a list of potassium rich foods which might be less likely to cause stomach upset.  A typical diet can provide you with approximately 2000 mg of potassium. Aim to boost your diet with potassium rich food by another 500-1000 mg to fight muscle cramps and dehydration.

Spinach (1 cup cooked):                900 mg potassium

Baked potato (1 medium):           920 mg potassium

Dried Apricots (1/2 cup):               755 mg potassium

Acorn Squash (1 cup cooked):    899 mg potassium

Yogurt (1 cup nonfat):                    625 mg potassium

Salmon (3 oz)                                     534 mg potassium

Avocado (1/2 cup mashed):        558 mg potassium

To learn more about topics presented at the Patient Education Conference, visit our YouTube and SlideShare sites for slideshows and videos about managing scleroderma.

 

 

How I Turned My Life Around by Not Letting Scleroderma Define Me

Kelly Kohls has battled scleroderma for the past 13 years and is dedicated to learning how to more effectively deal with the hardships and struggles that accompany the disease. Over the past few years, Kelly has become a mother, a runner, and a fitness coach- constantly pushing herself and achieving new milestones she never thought possible. As a patient who felt she was defined by her disease, learn how her change in mindset and lifestyle has impacted her self confidence, health, and relationships.

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Scleroderma, oh scleroderma (GRRR), let’s just say we have an interesting relationship. I can finally say  now, that it is what I WAS. I mean, don’t get me wrong, I still carry this disease with me every day but let’s just say I’ve come a LONG way from where I began 13 years ago.

FACING CHALLENGES EARLY ON

When I was diagnosed, I had just married my high school sweetheart and was looking forward to our new life together. All of a sudden our world completely changed; it was seriously like someone had swung up a stop sign and smacked me right in the face with it. For the next SEVEN years of my life I was miserable. I was ill and I lost who I was.

Like any autoimmune disease I was exhausted. Not only was the scleroderma kicking my butt, the medication had me completely turned upside down. By the time I was 25 I’d lost most of my independence. My hands significantly crippled. My entire body was so tight it was hard to just move around doing daily tasks. I remember one Saturday specifically my husband, Mike, left for the races. I was heading out later in the day and it didn’t dawn on me that he had never helped me put my socks and shoes on before he left. So I tried putting my socks on. I sat on the edge of the bed and struggled for what felt like hours, my whole body hurt trying to reach my feet. I cried and sat, then tried again and struggled and sat, then I just sat and sobbed. I couldn’t take care of myself. It was heartbreaking, almost like a part of who I was died. I had to accept this new sick person; I had to accept being dependent on others and to accept the changes it was making to my body; internally & externally.

Every three weeks for several years I spent many long days getting IV infusions and blood transfusions because my body couldn’t keep healthy counts that are vital to live. Now, when I think back it just seems so crazy to me how we take our bodies for granted. We just expect them to do ALL the things they are supposed to do at all the right times. Crazy, isn’t it?

THIRTY rolled around…wow, were did that come from? It was the point in my life that I was told I couldn’t have children because I was too ill. This was TOTAL heartbreak on an entire new level! It completely devastated me. Mike was so supportive through everything – my rock and my one true love. Not only did he take care of me but let’s face it, his future was forever changed too. Although he assured me many times that it was okay, a big part of me always felt guilty for taking that away from him.

Little did I know that 30 was going to be a BIG year for me! It was the year I asked myself just WHAT in the heck is going on here? In the last seven years I had battled this horrible disease, my mom suddenly passed away and I was told my future dreams are no longer possible. To say my life was a hot mess was a total understatement.

TURNING THE CORNER

You guys, I just wasn’t having it. I HAD to turn my life around. I HAD to live it. I’m ONLY 30!! I want to enjoy life and have all the things I ever wanted.

So, I set some pretty huge goals for myself. I realized that I could never cure myself from scleroderma but I knew deep down that there were things I could do to get as healthy as I could control. So, okay guys, are you ready for it? I bought a treadmill! Yes, me! The one who couldn’t even put her own socks on. My goal was to be a runner someday, so every night I walked on this treadmill. Before I knew it I was jogging-3 miles! By the time I was 32 I was a runner- tada! I was running 4+ miles at a 9-10 minute mile…say what?? I was eating healthy & cut out processed foods. Don’t ask me how or why but I went into a “sort of remission.”

Guess what? You’ll never guess! Shortly after I turned 35 I had a precious baby girl. Gahhh!! I’m tearing up right now! Emily is the name of my little miracle. My pregnancy was closely watched but was healthy, normal and very exciting! She was born healthy and continues to be a healthy sweet little two year old. Although I still have scleroderma and deal with struggles each day, I am counting my blessings by continuing to be healthy. Pushing myself each day to be in a POSITIVE state of mind has allowed me to make amazing strides.

MY LIFE TODAY

Last year I became a fitness coach and I’m in the best health I’ve EVER been! I continue to eat clean and workout every day; I’d also totally be lying if I didn’t say, heck yes I struggle to workout some days. Heck yes I have to modify moves and take it slower – but becoming active and overall healthy about the things I can control has literally changed my ENTIRE life! Now I’m very passionate about coaching and helping other people change their lives to get healthy too – how amazing is that?! If you want it bad enough, you CAN do it! You really can!

I have everything I ever wanted. Well… I do carry scleroderma with me and I could definitely do without that. The one difference about it now though is I don’t let it define me. Yes, it’s what I have but it’s not WHO I am anymore.

It may sound cliché but life is truly amazing; it really is. Sometimes it’s sucky but it has made me a fighter, a strong person, a better person, an amazing mama and wife and I’ve learned to appreciate every moment.  We are all blessed in our own way; you need to fight to find yourself. Only then will you always see the beauty in everything – good and bad.

-Kelly Kohls

 

Knock Out Scleroderma!

Many brave souls made their way to UFC Gym on May 21, 2016 for an action-packed morning of boxing at the 2nd annual Knock Out Scleroderma! The McCaffrey family started this fitness event last year in honor of loving mother and wife, Jan, who battled scleroderma for many years.

UFC Gym hosted an hour boxing lesson for participants before they made their way to The Scout Waterhouse + Kitchen for appetizers, beer, and prizes. This fundraiser was tons of fun and raised approximately $3,000 for the Scleroderma Foundation! Way to go!

We are always impressed with the ideas that our supporters come up with for fundraising and the determination they have to make a difference. A huge thank you to the McCaffrey family for their ongoing support. These types of community fundraisers truly are the lifeblood of our organization and provide hope to scleroderma patients everywhere.

If you’d like to start your own fundraising event, you can use the “Hoperaiser” fundraising tools on our website, or reach out to us at 312-660-1131 for more information.

 

Great job everyone! See you again next year!

How Exercise Can Change Your Life: One Patient’s Inspiring Journey and Practical Tips for Everyone

Christina Montalvo is a Corrective Exercise Specialist and Nutrition Coach. She met Marie, a scleroderma patient, almost four years ago at a local gym and started focusing on improving Marie’s strength, mobility, and ability to perform daily activities. Using different exercises, common equipment and modifications, they have been able to reach these goals. Christina noted that even 10 minutes a day focusing on intentional movements can help anyone gain strength and confidence. She is a firm believer that exercise is for everyone and the benefits are limitless.

Christina and Marie will share their experience and exercise tips during a presentation at the Scleroderma Patient Education Conference on April 16, 2016, presented by the Scleroderma Foundation, Greater Chicago Chapter. Christina and Marie will be discussing the proper mindset of exercise, sample different exercises and modifications, and show some common exercise equipment that anyone can buy.

Christina expands on this by saying, “There are not any specific or unique exercises that I do with Marie because of her scleroderma, but rather, I use a variety of techniques to provide her with a safe environment and proper modifications that she needs due to her limited range of motion. By strategically implementing these modifications (example below), she is able to strengthen muscle groups that otherwise could not have been properly strengthened. Overtime, as strength is gained, the modifications change as her body allows. However, some modifications will always be necessary, and that is perfectly okay!”

QUICK TIP:

Christina explained that Marie has limited range of motion in her hands, so when they need to do something that would normally require her hands to be flat on a surface, like one would do in a push-up, for example, using handles allow her to assume a similar position without her hands being a limiting factor. This is not a strength issue, but rather a mobility issue. Here is one of the tools they use to overcome this. By using these handles whenever one would need a flat hand, Marie is able to do things in her workouts she once thought she could not.

Christina goes on to say, “Marie and her body will tell me what she can and cannot do, and the goal is never to push her farther than she is physically able. With some innovation and imagination, we are able to incorporate things she once thought she could not do by finding viable solutions instead of focusing on the problem. There are things Marie is able to do physically now that she never thought could be possible- with enough time, patience, proper modifications, a safe workout environment,and the right attitude, the possibilities are endless.”

You can see Christina and Marie’s full presentation on April 16, 2016 at the Scleroderma Patient Education Conference in Oakbrook, IL. For more information and to register go to http://www.brownpapertickets.com/event/2495947. The event is free to attend.

 

Every person is unique. Always remember to consult your physician before beginning any exercise program.

VIDEO: Progress in Diagnosis and Management of Scleroderma Lung Disease

 

Watch John Varga, MD speak at the Scleroderma Patient Education Conference on October 10, 2015.

The video highlights important details about current treatments, the importance of accurate diagnosis and screening, and the future treatments on the horizon. Dr. Varga stresses the importance of integrative care for patients and accurate screening to provide effective treatments for the varying degrees of lung disease. Since 60% of scleroderma patients present with lung complications, it is important to attribute symptoms of lung disease correctly and also not misconstrue those symptoms to another complication involved with scleroderma.