Tag Archives: scleroderma foundation

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.

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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.

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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.

 

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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.

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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.

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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.

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.

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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/

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

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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.

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