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.

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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

Thriving with Scleroderma

Lisa Helfand shared her personal journey at the Spring 2015 Scleroderma Patient Education Conference, with a presentation titled “Thriving with Scleroderma.” In case you missed it, the inspirational video is posted below.

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Highlights include:

  • Her long process of a diagnosis. Lisa’s been a scleroderma patient for 30 years. Initially, her scleroderma went untreated for two years and was characterized as warts.
  • Instead of living her life she was told she needed to devote her life to the disease.
  • Dealing with daily pain and the active decision to not dwell on it.
  • You don’t need to be positive all the time. Allow yourself a day to be sad, but take the next day head on.
  • Compassion and advice for anyone living with a chronic illness, particularly scleroderma.

Lisa is not only thriving with scleroderma herself, but wants to inspire others to do the same. In addition to public speaking, she writes a blog, wrote a book and started a campaign called “Face Off for Scleroderma” after she posted a photo to Facebook and it was denied. She encourages others to participate by posting photos sans makeup.

To connect with Lisa and read more of her inspirational posts visit her blog.

Additional tips on thriving with scleroderma:

  • Meditation: Allow yourself to develop a routine to organize your thoughts. Whether it’s yoga, writing a story, or doing breathing exercises, it’s important to do something for yourself.
  • Highs and lows (roses and thorns): This is always a fun interactive game to play around the dinner table or whenever you’re together. Even if you aren’t having the best day, this activity allows you to focus on the great things that happen every day. Believe me, you can always find at least one.
  • Don’t accept depression: There is a strong correlation between attitude and quality of living. If you’re struggling with depression please talk to your doctor, a psychiatrist, or another trusted individual. It’s important to keep your routine as normal as possible after a diagnosis because you and your family feed off each other and need to reciprocate support.
  • Be patient: Find the right doctor for you. It’s important to find a team of doctors that communicate and make you feel comfortable. A diagnosis like scleroderma will not be an easy road and so it’s valuable to have a team that understands not only your disease, but you as well. The Scleroderma Foundation can help provide physician referrals.
  • Support System: Recognize the people in your life that mean the most to you. Everyone has moments of weakness and it’s important to have a strong support system behind you to lift you up when needed.

As Lisa says, “You have three options: give up, give in, or give it all you’ve got!”

 

Source: http://www.niams.nih.gov/Health_Info/Scleroderma/scleroderma_ff.asp

Scleroderma walk season is upon us!

Looking for a fun way to keep active this summer and enjoy the beautiful weather outdoors? It’s walk season! Come participate in a Stepping Out to Cure Scleroderma walk and help raise money to find a cure!

Our online fundraising tools make it easy to set a fundraising goal, personalize your fundraising page, contact family and friends, and track your progress. Get started today by registering for a walk near you! If you can’t attend, you can still register and help raise money online.

Listed below are the upcoming scleroderma walks and links to register for the event. The more the merrier- so bring your friends and family too!

Walk Schedule:

Stepping Out to Cure Scleroderma- Springfield, IL
Saturday, June 20, 2015

Stepping Out to Cure Scleroderma- Highland Park, IL
Sunday June 28, 2015

Reason to Rock Fun Walk and 50s Fest- Geneva, IL
Sunday, July 26, 2015

A note from the walk coordinator, Marcia Warren: We’re excited about our 2nd Annual Reason to Rock walk on Sunday, July 26, at the Fifth Third Bank Ballpark (home of the Kane County Cougars) in Geneva, IL.  The event has a 50’s theme and starts out with a walk around the track, and then music, food, fun and a classic car show.  We had a great turnout last year and hope you will join us this year to help support the fight against Scleroderma!

Stepping Out to Cure Scleroderma- Germantown, WI
Sunday, August 16, 2015

Stepping Out to Cure Scleroderma- Dixon, IL
Saturday, September 12, 2015

Stepping Out to Cure Scleroderma- Highland, IN
Saturday, September 19, 2015

Put on those walking shoes and we hope to see you out there!

Spotlight: Franny Kaplan, Support Group Leader, Highland Park

FullSizeRender

Recently we interviewed Franny Kaplan, our newest support group leader! She’s excited to be starting a group on the North Shore of Chicago, in Highland Park, IL and invites you to get involved. If you are interested in joining this support group or learning more, contact Franny at NSscleroderma@gmail.com. The first meeting will be held Saturday, May 2, 2015.

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

FK: There are no support groups serving Northern Cook or Lake County at this time. I know several people who suffer with this disease who have no one to discuss issues with or have the resources to learn about coping alternatives.

SF: When and where will your group meet?

FK: The support group will meet the 1st Saturday of every other month beginning May 2, 2015 at the Chase Bank (lower level) in Highland Park on the corner of Central Avenue and Saint John’s Avenue. Meetings will be from 10am to 12pm.

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

FK: I’m looking forward to sharing my experiences by fostering a group who feels comfortable with sharing their fears, feelings and accomplishments in dealing with their illness. Learning from these same individuals to help me deal with my feelings and fears…to help me accomplish more.

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

FK: One day at a time, don’t procrastinate in taking care of yourself, seek solutions, take charge, ask for help and be your own advocate.

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

FK: My husband and I love to travel and spend time with our children and grandchildren. I enjoy being with friends, reading, yoga, working out, playing canasta and mahjong. I love to cook and entertain and enjoy giving back to my community. I retired about a year and a half ago working for 30 years in the medical field. Although not clinically trained I have worked in many areas of internal medicine. Prior to that I taught elementary school.

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

FK: I hope the group will help members by being open minded, non-judgmental and positive while listening to them during their difficult times. I hope we can become a community of common interests, not only of a common disease.

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

Eating Healthy with Scleroderma

Healthy eating can be difficult sometimes, but we all know it can be beneficial for your health. There are foods that can be included or excluded from your diet that could help to manage some symptoms of scleroderma. Results may vary from patient to patient, since each person is unique, and it’s always best to discuss food options with a nutritionist when possible.

Staying Healthy and Strong with Scleroderma

At our recent Scleroderma Patient Education Conference in Chicago, Bethany Doerfler, MS, RD, LDN for the Northwestern Scleroderma Program discussed how to stay healthy. She goes into detail about nutrition and describes the portion sizes when preparing your meals. She discusses the loss of muscle and how eating the right portions of protein, as well as exercising could help to improve that problem. To watch the video for more information click here: 

Combatting Symptoms with Food

Scleroderma affects thousands of people and the symptoms that accompany the disease can sometimes be exhausting. In addition to medications prescribed by your doctor, these recommendations could be a nice addition to your daily regimen. Here are some scleroderma symptoms and food recommendations that could help manage them:
• Decreased GI Mobility/Constipation: High fiber diets with 100% whole grains, fruits, and vegetables; daily probiotic     and/or yogurt with active cultures
• Inflammation: Deeply colored fruits and vegetables can help to increase antioxidants; eat fatty fish, ground flaxseeds,   and walnuts for omega-3 fatty acids; eat vitamin E-rich foods such as nuts, seeds, and extra-virgin olive oil; consider taking a 1000 IU Vitamin D3 tablet with your fattiest meal, which allows for better absorption.
• Fatigue: In order to keep blood sugar regulated, and have continuous energy you should eat small meals throughout the day. If taking an iron pill, you can take with juice that contains vitamin C to allow for better absorption.
• Raynaud Phenomenon: Animal sources of protein with zinc and iron
• Tight skin: Foods rich in vitamin E such as nuts, seeds, wheat germ, and canola, olive, and peanut oil

Source: University of Michigan Health System. “Eating Well with Scleroderma by Linda Kaminski, MS, RD, CDE” http://www.med.umich.edu/scleroderma/patients/nutrition.htm

Providing information and inspiration for scleroderma patients and caregivers in Illinois, Wisconsin and Indiana.