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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

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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

Leg “Cramping” Your Style? Ask the Dietician.

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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.


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

JPP (22 of 61).jpgKelly 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.


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.

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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.

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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

2015-08-15-20-21-18

 

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.

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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.

Spotlight: Britney Helm, Support Group Leader, Milwaukee

Recently we interviewed Britney Helm, one of our new support group leaders! She’s excited to be starting a group in Milwaukee, Wisconsin and invites you to get involved. If you are interested in joining this support group or learning more, contact Britney at brit12@gmail.com.

formal pic britney
SF: Why did you decide to start a support group?

BH: When I was diagnosed with Scleroderma, I researched online and found a lot of information. I had no one to help me deal with the emotional and physical part of the disease.  After being a member of another Scleroderma group, I realized that there is a need in the local area to help one another.

SF: When and where will your group meet?

BH: We meet every 3rd Saturday of the Month from 10am-12pm.
Location:  Froedert Hospital – 8700 W Watertown Plank Rd, Wauwatosa, WI 53226

–Community Conference Room 2 located in the Wisconsin Athletic Club building.  Enter building on the 87th Street side look for Community Conference Room entrance.

SF: What are you looking forward to the most in being involved with this group?

BH: The most important part of this group to me is to help others.  This disease is scary and is unknown throughout the community. Nothing is better than to have your fellow Scleroderma members coming together supporting each other.

SF: How do you intend to help or inspire others?

BH: I hope to encourage others that this disease can define a part of who you are, but it can’t take your joy.

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

BH:
I love to laugh.

I have hunted alligators in the Panamanian jungle

I love snow, but hate being cold.  I have a lot of gadgets, and a kit that helps keep me warm.

I drive a motorcycle as much as I can, like cars, and getting dirty with tools.

I love to travel.

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

BH:

For patients: Be your own advocate.  Never just take a doctor’s word.  Do your own research and journal your symptoms.

For caregivers: This is tricky because I have seen very supportive people run for the hills.  Caregivers, you will never understand what is going on with Scleroderma patients because the Scleroderma patient doesn’t even know half of the time.  Be patient and understanding.  We are always cold; we are tired but we still want to have fun.  To have fun we have to charge our battery to have a little bit of excitement.  Be patient with us, we are delicate.

 

Britney Helm Group

Britney Helm with her 2015 Germantown, WI  Walk Team

 

Gaining Weight with Scleroderma

Q: My doctor wants me to gain weight but Ensure and Boost give me diarrhea. How else can I add calories?

A: Gaining weight can be difficult for patients, especially if supplements like Ensure and Boost cause digestive
banana.pngupset. These supplements contain sugars that can pull water into the gut, causing loose stools. If Ensure and Boost are not helping you gain weight because of these side effects, adding in a few snacks per day can help. Weight gain can result from eating an additional 500 calories a day. You can reach this calorie goal by planning 2-3 snacks throughout the day.

 

Snacks containing fat will provide more calories than carbohydrate oravoprotein snacks. Foods high in unsaturated fats, such as avocados or nuts, are great high-calorie healthy options. Although carbohydrates and protein-containing snacks do not have as many calories, they are still good options to include with a high-fat snack.

Incorporate snacks throughout your day by:

  • Packing snacks for when you’re on-the-go
  • Prep snacks at home in the morning so you’re organized for that day
  • Try to schedule when you will fit in your snacks so you don’t forget about them
  • Designate a section of your fridge or pantry for snacks

Here are some high-calorie snack ideas:

Sweet Salty/Savory
Small banana w/ 2 tbsp almond butter 1 oz cheese with crackers
1 cup yogurt w/ ½ cup berries and ½ oz nuts ½ cup egg salad on 1 slice toast
1 small apple w/ handful of almonds ½ cup trail mix
1 cup berries w/ almond or nut granola ½ cup guacamole w/ tortilla chips or veggies
1 slice toast with 2 tbsp SunButter 2 slices avocado wrapped in 2oz deli turkey  
½ PB&J sandwich ½ cup cottage cheese w/ ¼ avocado chopped
1 waffle w/ 1 tbsp nut butter and berries Rice cake with 2 tbsp almond butter

 

 

 

 

SOURCES:

Caruso, Emily. (2015, May 28). 5 Tasty Toast Recipes to Try. Hayati Magazine. Retrieved from http://hayatimagazine.com/living/food/5-tasty-toast-recipes-to-try/  
(2014, May 31). Evening snack on rye bread with cottage cheese and avocado. [Web log]. Retrieved from http://www.eatmorevegetarian.com/evening-snack-on-rye-bread-with-cottage-cheese-and-avocado/

Preparing for a Doctor Appointment

Patients that have been diagnosed with scleroderma often have many questions regarding how to prepare for their doctor appointments. Common questions include: how to have multiple physicians talk to each other and how to have your physician pay attention to concerns and not be in such a rush. Here are tips for your next appointment.

  1. Prepare for your appointment. What do you hope to achieve and what do you need to know? Thinking about these things ahead of time can help you get the most out of it.
  2. Make sure you write down your symptoms as they occur so you don’t forget to tell your doctor everything that’s going on with your body. Consider keeping a journal.
  3. Your first appointment with the doctor may be very long to obtain an extensive health history. However, other appointments may be much shorter. Be aware of this time constraint. If you need more time, schedule extra time with the receptionist.
  4. Unless you are required to fast, don’t be afraid to bring snacks. You never know exactly how long the appointment will be.
  5. It may be helpful to write down your list of questions, ordered by priority, to hand to your doctor at the beginning of the appointment. That way, your concerns are listed and each will be addressed.
  6. Bring a friend or relative with you so the appointment is not as overwhelming. They can help remember what the doctor said as well as be an advocate for you.
  7. Don’t forget to mention all current medications, alternative therapies, and vitamins you’re taking as they could be contraindicated.
  8. You should be able to trust your doctor, but you are your best advocate and should seek a second opinion if you feel it’s needed. If you aren’t your own best advocate, who is?
  9. Bring a calendar with you to plan for your next appointment. Do not hesitate to call your doctor if symptoms worsen or if you have questions before the next appointment.
  10. Treat yourself after your appointment! Many of us are busy taking care of family, friends, work and other responsibilities. Use these days as a reminder to do something for yourself, even if it’s as simple as stopping for a coffee.

REMEMBER: This is YOUR appointment and you are allowed to ask questions, challenge what is said and be your own advocate. If you have multiple physicians, ask how they are able to work together and what can be done to strengthen your team of doctors.

A helpful acronym to use as you prepare for your next appointment: DOCTOR

Document all of your questions to give to your doctor

Over prepare for your appointment-what do you wish to achieve?

Call your doctor if you have any questions or worsening symptoms

Take a friend or relative with you

Overbook-schedule extra time with your doctor if you need or want more time

Reward yourself after the appointment

Treatment Options for GERD

This week Bethany Doerfler MS, RD, LDN, a clinical research specialist working with Northwestern Memorial Hospital in Chicago, answers one of the many questions that patients prescribed new medications may have. Look for additional posts with commonly asked questions in the future to appear on this blog as well.

 

Q: My GI MD prescribed a proton pump inhibitor. I have read these can contribute to loss of bone density. I already have Osteoporosis should I continue to take this medication?

A:  A combined medical and lifestyle approach is needed to effectively treat GERD. Dietary changes alone cannot entirely prevent stomach contents (food and digestive acids) from washing back up into your esophagus. If untreated with medication, acid exposure can create inflammation and ulceration in your esophagus. Some observational research studies suggested a higher risk of hip fracture in patients who are on long-term acid suppression therapy, spiking concern over bone health. However, recent studies indicate long term PPI use does not increase risk of osteoporosis in the hip or lumbar spine (area studied by a bone density scan) .1 Furthermore, the American College of Gastroenterolgoy suggests that patients with known osteoporosis can remain on PPI therapy.2
If you have osteoporosis or are concerned about developing loss of bone mineral density, it is best to optimize your calcium and vitamin D rather than stopping your PPI therapy. Vitamin D deficiency can be common among patients with Scleroderma. Adult females should aim to consume a mixture of calcium from foods and supplements and achieve a total of approximately 1000 mg calcium daily and 600 IU Vitamin D daily. If you have been diagnosed with a Vitamin D deficiency you may need to take a prescription dose that is higher and is prescribed by your doctor.

Referenced Articles:

  1. Targownik LE, Lix LM, Leung S et al. Proton-pump inhibitor use is not associated with osteoporosis or accelerated bone mineral density loss. Gastroenterology 2010;139:93-101.
  2. Katz, PO, Gerson LB et al. Corrigendum: Guidelines for the Diagnosis and Management of Gastroesophageal Reflux Disease. Am J Gastroenterol 2013;108:308-328.

 

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