Category Archives: Education

Taking Control of Your Life: Food as Medicine

Western MD vs Functional MD Tree ImageJoanne 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 two of a five part series from Joanne on functional medicine.

If you’re living with scleroderma or another autoimmune disease, you know how overwhelming it can be to manage. In a previous post on this blog, I described my challenging personal journey with autoimmune disease, and my eventual discovery of Functional Medicine (FM) – an innovative health approach that complements Western medical practices. FM has helped me feel better than I had in decades. I want that for you, too. Let’s start by exploring some specific factors FM addresses so you can begin to take control of them.

Functional Medicine Perspective on Autoimmune Disease

The first factor is food. FM advocates approaching food as medicine. To understand why, let’s consider the potential causes of autoimmune disease from the FM perspective. FM confronts autoimmune as a disease of the immune system, where a common internal system connects all autoimmune conditions. In some individuals, that connected system reacts to certain triggers (shown below), causing an autoimmune response. Unfortunately, many of these triggers are commonplace in modern life, and people with autoimmune disease can go for years without making the connection.

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The Importance of Gut Health

The core of that interrelated biochemical process is the gut, making it critical to overall health. Our gut is important to our overall wellbeing because its health determines what nutrients we absorb and what toxins, allergens and microbes are kept out. Good intestinal health enables optimal digestion and absorption of food, which in turn allows the important processes within our bodies to function well. Many diseases that seem totally unrelated to the intestinal system, such as psoriasis or arthritis, can actually be caused by problems in the gut.

The modern diet is full of foods that can create gut problems (processed foods, sugar, bleached flour, caffeine to name a few) and for some of us they trigger an autoimmune response. Pervasive in today’s food options, gluten— a protein found in wheat, barley and rye— is one of the leading offenders. While gluten-free diets are all the rage, they’re not just another fad. People who are sensitive to gluten or who have Celiac disease can have serious health consequences.

A growing volume of published medical literature shows that gluten can damage the gut lining, contributing to intestinal permeability (Leaky Gut Syndrome) and allowing bacterial toxins and undigested food particles to pass into the bloodstream. This can lead to the malabsorption of nutrients (Gut Dysbiosis, a microbiome imbalance), and can cause inflammation throughout the body—which can eventually trigger chronic and autoimmune disease. Beyond the oft-mentioned GI issues, gluten has been linked to scleroderma, Hashimoto’s, Graves’, diabetes and lupus. If you have one of these conditions, consider a gluten elimination plan and monitor your symptoms!

Think About Food as Medicine

We may not be able to change our genetic predisposition for autoimmune disease (30% of our risk), but we can change what we eat. Beyond gluten, sensitivities to other foods—dairy, soy, corn, peanuts or sugar—may contribute to your symptoms. Be mindful when you eat and notice how you feel afterwards. Try to identify and remove any foods that trigger inflammation and worsen your symptoms.

While there is no “one best” food plan for everyone, consider these practices: eat “the rainbow” – colorful fruits and veggies for important phytonutrients and antioxidants; consume healthy fats like olive oil and avocados; choose anti-inflammatory foods like broccoli, spinach, ginger, wild salmon and bone broth; add fermented foods like coconut kefir, sauerkraut, and pickled ginger for probiotics. Very importantly, stay hydrated! Water helps eliminate toxins and is an important contributor to body function.

My next post will explore the second factor FM addresses – our high stress modern lifestyle – and how it impacts autoimmune. Until then, I wish you good health!

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Thriving with Functional Medicine

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!

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.

 

 

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.

VIDEO: Management of the Skin in Scleroderma

Lauren Graham, MD, PhD, from the Northwestern Department of Dermatology joined us in October to discuss ways to manage the skin in scleroderma patients. Topics included treatment of telangiectasia using laser lights, full coverage makeup, the scratch itch cycle, Raynaud’s, digital ulcers, and calcinosis.

Laser light treatment causes damage to the vessel and forces it to collapse and scar down so blood can no longer flow through the vessels. This can cause bruising and so Dr. Graham recommended talking to your doctor about which strength is best for you. She also noted that while a normal patient is typically happy with their results after 2 treatments, it could take 3-4 treatments for a patient with scleroderma to be satisfied. Insurance does not generally cover treating telangiectasia with laser lights, but it’s possible for your physician to appeal this decision.

There are multiple brands of makeup that offer full coverage and are recommended by many dermatologists. These include:

  • Cover FX
  • Dermablend
  • Cinema Secrets
  • Microskin (only available in New York and California)
  • MAC

Dr. Graham also discussed the scratch itch cycle and had a few tips to help minimize the effects including:

  • Keep your moisturizer in the fridge
  • Cool water compress
  • Buy fragrance free lotions and not unscented
  • Ointments are the most effective moisturizers
  • Having your doctor mix corticosteroids with Eucerin or CeraVe to lose some of the greasy texture

She specifically recommends Vaseline because it has the least amount of ingredients and is less likely to cause allergies.

For Raynaud’s Dr. Graham pointed out that some medications can make your symptoms worse. She discussed limiting your exposure to cold in places such as the freezer, grocery store, air conditioning, and while holding cold beverages. Another way to do this is by keeping gloves with you, wearing layers, using electric heaters, and not wearing cotton while working out because cotton gets cold when wet. Smoking is another trigger for worsening symptoms with Raynaud’s.

Digital Ulcers are worse when skin is stiff so it is important to keep moisturized. Dr. Graham recommended Bosentan because it can decrease the amount of new ulcers, but has no effect on existing ones. There has also been success with botox and localized digital sympathectomy. Other tips included avoiding infections, making sure your shoes aren’t too tight, and being honest about pain. Remember to visit the ER if your digits are blue/black.

Dr. Graham also talked about how there are 361 trials for Calcinosis, but many are for things other than Scleroderma.

Remember to always talk to your doctor about any possible treatments because they know what’s best for your condition.

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/

Scleroderma in Children

            If your child has recently been diagnosed with scleroderma or juvenile scleroderma, you have probably been searching the internet for information pertaining to it. You have a multitude of questions about this disease and this information is this article is geared towards helping you accomplish just that.

         There are two forms of scleroderma: localized and systemic. Children are more likely to be diagnosed with localized scleroderma rather than systemic. Systemic scleroderma occurs more in women between the age of 20 and 50 but if your child has this illness it is extremely rare. Localized is less severe because it does not cause damage to your child’s internal organs like systemic. Systemic scleroderma is a chronic, degenerative disease that involves the skin, joints, and internal organs. In many instances, the first symptom that occurs is the Raynaud phenomenon. The following is a link to a brochure for juvenile scleroderma: http://www.scleroderma.org/site/DocServer/Juvenile.pdf?docID=316

         After being diagnosed, children attempt to come to terms with what having this disease means to them. It is important to help the child understand the disease and what will be happening to them. Also, you should help the child to come up with simple explanation for any visible discrepancies on their skin. This will keep the child from having to struggle to find some explanation or from being embarrassed about the situation. You should encourage children to continue to socially interact with theirs peers.

Connecting with Others: Additional Resources

The following is a link to read other children’s stories to let your child see that they are not alone. http://www.scleroderma.org/site/DocServer/Juvenile.pdf?docID=316

.Would you like to connect with other parents and ask questions about scleroderma? There is an online community called “Inspire” offered through the Scleroderma Foundation that allows you to communicate with other parents. https://www.inspire.com/groups/scleroderma-foundation/

Oral Health Issues in Scleroderma

Dr. Martin Hogan will be presenting on the topic of oral health care at the annual Patient Education Conference on Saturday, April 18, 2015 in Naperville, Illinois.

For more information visit the Scleroderma Foundation’s event page here or email GCchapter@scleroderma.org to register for the event.

Those diagnosed with Scleroderma are more likely to experience challenges in maintaining their oral health not only due to the many related physical symptoms, but also because of difficulties with hand movements that can impair activities like brushing and flossing. Conditions associated with Scleroderma can sometimes make dental appointments more difficult as well. Fortunately there are many treatments available to address oral health concerns.

Microstomia and Tightness of the Mucosa (lining of the mouth)

Systemic Scleroderma can cause the mouth area to shrink and harden. The resulting limited mouth opening can create difficulties with speech, eating, and dental care. Activities such as brushing teeth, flossing, and dental procedures may become difficult to perform.

The tightening of the mucosa in the mouth can cause the gums to be pulled away from the teeth as well.

Treatment: There are several exercises that may be helpful in improving the flexibility of the lips and jaw muscles. Periodontal surgical options exist to improve mobility of the tongue and cheeks. There have recently been several newer treatments developed as well, including phototherapy to improve skin elasticity as well as surgical correction for microstomia.

Xerostomia (Dry mouth)

For Scleroderma patients, dry mouth may be caused as a side effect of some medications, such as antidepressants and antihypertensives. Xerostomia is also especially common in those with secondary Sjogren’s syndrome.

Dry mouth and soreness of the oral mucosa is common, and additional complications related to Xerostomia include tooth decay, gum inflammation, and potentially fungal infections such as thrush.

Treatment: It is important for patients to avoid substances that can worsen oral dryness such as alcohol and cigarettes. Sugary drinks should be avoided, as excessive consumption can increase the risk of tooth decay and erosion of the outer surface of the teeth.

Simple steps to alleviate dry mouth include drinking plenty of water, utilizing prescription fluoride toothpaste, and making sure to thoroughly brush teeth at least twice daily. Additional treatment options include medications that are designed to increase saliva production, and using a calcium paste for nighttime oral care.

Sclerodactyly

The tightening of the skin on the hands and fingers experienced by Scleroderma patients can interfere with the ability to perform many daily activities, including oral care. Changes in the skin can make holding a toothbrush and flossing difficult.

Treatment: The use of adaptive devices or the use of an electric toothbrush may be helpful for those with limited dexterity. Extended-handle brushes can be especially effective for patients who experience difficulty raising their arms. You may also want to consider using a Waterpik Flosser if flossing has become challenging for you.

Dysgeusia (Changes in taste)

Dysgeusia, or changes in taste sensation, can occur with Scleroderma and as a side effect of some medications. Since taste and appetite are related, dysgeusia can cause a decrease in appetite and subsequent weight loss for some.

Treatment: When indicated and advised by your physician, changing medications can often alleviate alterations in taste sensation. Treatment of other conditions that you may be experiencing, such as xerostomia (dry mouth) can be helpful in improving taste sensation as well.

 

Myofacial Pain and Temporomandibular (jaw joint or TMJ) Pain

The TMJ joint is located in front of ear each, and pain associated with this joint is not uncommon among those with Scleroderma. Symptoms of TMJ can include ringing in the ears (known as tinnitus), muscle spasms in the jaw, and earache. Associated pain may be mistaken by some as tooth pain and can impair an individual’s ability to chew food, causing sensitivity in the jaw and face.

Treatment: Your doctor can prescribe medications and suggest additional treatments that are specific to your own symptoms, but generally over the counter pain relievers such as ibuprofen can be helpful in reducing TMJ related pain. Eating soft foods, performing facial exercises, and avoiding extreme jaw movements as much as possible can be beneficial as well.

Gastroesophageal Reflux Disease (GERD or acid reflux)

Gastroesophageal Reflux Disease can cause acid from the stomach to come back up into the esophagus and into the mouth. One of the most severe risks associated with GERD is tooth erosion that can occur due to repeated contact of acid onto the teeth. Additionally, some medications that are prescribed to treat GERD symptoms can exacerbate dryness of the mouth, which is a risk factor for increased dental plaque.

Treatment: Many of those diagnosed with GERD suck on lozenges or candies to lessen burning feelings that they may be experiencing, which can be helpful in stimulating saliva production and easing symptoms of dry mouth as well. However this should be done with caution because of the high sugar content in many mints and candies that can contribute to tooth decay.

Treatments to ease symptoms of GERD often include implementing changes to your diet by avoiding foods that you notice cause an increase in unpleasant symptoms. Many people choose to eliminate spicy foods and alcohol along with seeing their physician for an antacid medication.

Depression

Depression and other emotional aspects of Scleroderma can make activities of daily living more difficult because you may not have the energy or desire to complete tasks such as those related to oral care like regular brushing, flossing, or attending scheduled dental appointments.

Treatment: It is important to address any mental health issues related to your Scleroderma diagnosis that you might be facing. Your primary care doctor can refer you to a psychologist or counselor who can help you to better understand and manage your emotions. If you have been experiencing negative side effects from medications that you have been prescribed you should discuss this with your doctor as well, so that they can adjust dosages or find alternate medications.

 

References:

http://www.scleroderma.org/site/DocServer/Dental.pdf?docID=313

http://www.sclero.org/medical/symptoms/dental/microstomia-small-mouth/a-to-z.html

Improving Quality of Sleep

A common problem associated with chronic illnesses is trouble sleeping and enjoying a disruption-free quality night’s sleep. Dr. Hrayr Attarian presented on this topic at the Patient Education Conference in October 2014.

Quick Tips to Improve Your Sleep:

  • Medcline Sleep Positioning Pillow is a supportive pillow to aid in side-sleeping and slightly elevated position to relieve nighttime GERD.
  • Establish a soothing pre-bed routine- your body will take the cue that it’s time to get ready for sleep. It might include: Light reading, listen to music, warm shower or bath, and meditation.
  • Keep your bed for sleeping only- avoid using it for activities such as watching tv. By doing this, your brain will associate your bed with sleep, and will help to induce sleepiness. Avoid “screen time” (phones, computers, tv) before bedtime because the glare of the light can stimulate your brain, instead of relax it.
  • Practice relaxation exercises- deep breathing, gradually tensing and relaxing muscles throughout body.
  • Finish meals a few hours before bedtime- trying to sleep on a full stomach is difficult and can be uncomfortable, which makes it tougher to fall asleep.
  • Avoid drinking a lot of water right before bed- doing so could cause you to wake up in the middle of the night for a trip to the bathroom, causing a disruption in your sleep and could make it harder for you to fall back asleep.
  • Avoid caffeine, nicotine, and alcohol within several hours of bedtime- even some pain relievers have caffeine, so be aware of that. Alcohol may help you to fall asleep, but it disrupts the activity of the brain during sleep, resulting in your sleep not being as restful as it should, and thus you may wake up already feeling tired.
  • Keep bedroom quiet, dark, a cool temperature and well-ventilated. A white noise machince can provide soft background noise to lull body to sleep, if needed.
  • Limit nap time during the day to 20-30 min if possible.

Harvard Healthy Sleep Tips

Sleep Foundation Mayo Clinic Sleep Tips