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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

 

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

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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.