Category Archives: Personal Stories

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!

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Top Fundraiser Shares Secret to Success

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This summer’s walks kick off on Saturday, June 24 in Madison and we couldn’t be more excited for this year’s top notch crew of walkers and fundraisers! We reached out to Gary Sylvan, one of our top fundraisers participating in the Highland Park, IL walk, to find out his secret for fundraising success. We found it inspirational how achievable the activities are that brought him so much success – he alone has raised nearly $10,000 for scleroderma research and support! Read on to learn how he does it!

SF: Thanks for taking the time to answer our questions Gary! What motivates you to be a top fundraiser?

GS: My motivation is multi-oriented. Scleroderma is a terrible disease with no known cure. I want to see a cure that works for those inflicted. Too many are stricken with this disease at an early age. One of those is my daughter. It tears at me to see her struggle through daily tasks, work, and her family (including 3 lovely little girls). Raising money is a way to fund research which will, hopefully, find a cure.

I am a competitive person, and raising funds is part of my DNA. I want to compete to motivate others to raise funds, to see who can come out on top. Money is key to research.

I hope to be the top fundraiser, and that my team – Team Lisa Joy – will be a top team. But if that doesn’t happen, it means someone else did a better job, and  the end result is more funds for scleroderma research and support.

SF: What do you attribute your fundraising success to?

GS: My fundraising success is based upon approaching it in an organized manner. I have a list of donors that I keep on my computer, and I update it for every donation. After receiving a donation, I send out a thank you email. I also attempt to think of new donors, including personal vendors and people with whom I do business (e.g. insurance agents, auto dealers) knowing there will be attrition in my donor list. I start my fundraising early, and prepare an email to prospective donors that explains the event and the need for funds. As time grows near, I regularly email those who have not donated.

SF: What’s your #1 tip for other fundraisers?

GS: My #1 tip is to stick to it! Be intent on making the fundraising effort a priority.

SF: What inspires you to stay involved?

I’m inspired to stay involved because I WANT to see a cure! We NEED to see a cure!

Thank you to Gary and all our walk participants and fundraisers! We’re walking for the cure and together, we believe it’s within reach. If you’d like to see a schedule of our upcoming walks and other fundraising events and get involved, visit www.SclerodermaEvents.org

Spotlight: Aissa Norris, Support Group Leader, Decatur/Springfield

Aissa NorrisRecently we interviewed Aissa Norris, our newest support group leader! She’ll be leading the Central Illinois support group and would love to see you there! If you’re interested in joining this support group or learning more, contact Aissa at 1912barn@gmail.com. More information on the group can be found on the Scleroderma Foundation Greater Chicago Chapter website.

Q: Why did you decide to lead a support group?

A:  I felt that I wanted to become more involved in finding a cure, making people aware of the disease and reaching out to others who are struggling with the challenges that come with this disease. I have had the opportunity to be a leader in other roles and feel that it is important to share my skills and take on this responsibility while I have the ability to do so.

Q:  When and where does your group meet?

A: We meet every other month on Saturday mornings at a Panera in Decatur. We are planning on holding informational meetings each quarter on Saturday mornings so that we are able to include spouses and invite guest speakers as well. We are also having a ‘mini-conference’ on Saturday, June 3, 2017. More information on the group meetings and the mini-conference can be found here.

Q: What do you love most about being involved with this group? 

A: The thing that is of greatest benefit is the friendships that I developed with others who understand chronic illness and how it can impact our lives. We learn from each other and most topics are on the table for discussion. It’s nice to laugh with others, share our concerns and help each other find resources that can be of great benefit as well.

Q: How do you hope to inspire others?

A: I hope that others will see that we can all have an impact which is positive in our lives no matter how ill we are. By sharing our stories and challenges we can each continue on in our lives with hope. I think too that my desire to inspire others comes from the “teacher” in me. I have always been drawn to helping people, specifically children and I hope that by bringing a smile, encouragement and hope to those in our group we each have a brighter day.

Q: Can you share any interesting facts about yourself?  

A: I feel as though I have had such a blessed life.  I have a close family and friends who are supportive. I have had wonderful opportunities to work with special needs students and to care for many children within my home. I have had fun hobbies, from being a hot air balloon pilot to currently running a vintage 103-year-old barn that hosts weddings and special events.

Q: Any words of advice for patients?

A: For those who are faced with challenges with this disease, give yourself permission to go through all the stages of grief related to the change in the life you expected to have, but don’t lose hope of the bright and fulfilling life you still can have. Don’t be afraid to voice your fears or anxiety about this disease. Often, we feel as though we need to be strong for others in our family, but we need to make sure that we are getting the emotional and psychological support for ourselves so that we are able to enjoy the life that has now been dealt to us.

Q: Any words of advice for caregivers?

A: Don’t be afraid to say that you can’t handle this role. Not everyone is meant to be a caregiver and being the individual who helps to find the right caregiver can save your relationship with your spouse, child or relative.  This disease has been dealt to you as well and changed your future too.  Take the steps needed to care for yourself both physically and mentally.  Educate yourself about the disease and don’t be afraid to ask the person with scleroderma how they truly feel, be persistent and listen. They need your love and understanding more than anything else on the good and the bad days.

Q: Why should someone get involved in a support group?

A: Getting involved in a support group whether on line or in person is so important for your mental well-being. Even if you aren’t ready to share yet, take the time to listen to others and giving them encouragement can assist them in healing as well as yourself.  Support groups provide you with the opportunities to grow and learn about the disease and the new treatments that might be headed our way. It can be empowering for yourself or you might even find that you are inspiring to others. Let your story be heard.

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.

How I Turned My Life Around by Not Letting Scleroderma Define Me

JPP (22 of 61).jpgKelly Kohls has battled scleroderma for the past 13 years and is dedicated to learning how to more effectively deal with the hardships and struggles that accompany the disease. Over the past few years, Kelly has become a mother, a runner, and a fitness coach- constantly pushing herself and achieving new milestones she never thought possible. As a patient who felt she was defined by her disease, learn how her change in mindset and lifestyle has impacted her self confidence, health, and relationships.


Scleroderma, oh scleroderma (GRRR), let’s just say we have an interesting relationship. I can finally say  now, that it is what I WAS. I mean, don’t get me wrong, I still carry this disease with me every day but let’s just say I’ve come a LONG way from where I began 13 years ago.

FACING CHALLENGES EARLY ON

When I was diagnosed, I had just married my high school sweetheart and was looking forward to our new life together. All of a sudden our world completely changed; it was seriously like someone had swung up a stop sign and smacked me right in the face with it. For the next SEVEN years of my life I was miserable. I was ill and I lost who I was.

Like any autoimmune disease I was exhausted. Not only was the scleroderma kicking my butt, the medication had me completely turned upside down. By the time I was 25 I’d lost most of my independence. My hands significantly crippled. My entire body was so tight it was hard to just move around doing daily tasks. I remember one Saturday specifically my husband, Mike, left for the races. I was heading out later in the day and it didn’t dawn on me that he had never helped me put my socks and shoes on before he left. So I tried putting my socks on. I sat on the edge of the bed and struggled for what felt like hours, my whole body hurt trying to reach my feet. I cried and sat, then tried again and struggled and sat, then I just sat and sobbed. I couldn’t take care of myself. It was heartbreaking, almost like a part of who I was died. I had to accept this new sick person; I had to accept being dependent on others and to accept the changes it was making to my body; internally & externally.

Every three weeks for several years I spent many long days getting IV infusions and blood transfusions because my body couldn’t keep healthy counts that are vital to live. Now, when I think back it just seems so crazy to me how we take our bodies for granted. We just expect them to do ALL the things they are supposed to do at all the right times. Crazy, isn’t it?

THIRTY rolled around…wow, were did that come from? It was the point in my life that I was told I couldn’t have children because I was too ill. This was TOTAL heartbreak on an entire new level! It completely devastated me. Mike was so supportive through everything – my rock and my one true love. Not only did he take care of me but let’s face it, his future was forever changed too. Although he assured me many times that it was okay, a big part of me always felt guilty for taking that away from him.

Little did I know that 30 was going to be a BIG year for me! It was the year I asked myself just WHAT in the heck is going on here? In the last seven years I had battled this horrible disease, my mom suddenly passed away and I was told my future dreams are no longer possible. To say my life was a hot mess was a total understatement.

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TURNING THE CORNER

You guys, I just wasn’t having it. I HAD to turn my life around. I HAD to live it. I’m ONLY 30!! I want to enjoy life and have all the things I ever wanted.

So, I set some pretty huge goals for myself. I realized that I could never cure myself from scleroderma but I knew deep down that there were things I could do to get as healthy as I could control. So, okay guys, are you ready for it? I bought a treadmill! Yes, me! The one who couldn’t even put her own socks on. My goal was to be a runner someday, so every night I walked on this treadmill. Before I knew it I was jogging-3 miles! By the time I was 32 I was a runner- tada! I was running 4+ miles at a 9-10 minute mile…say what?? I was eating healthy & cut out processed foods. Don’t ask me how or why but I went into a “sort of remission.”

Guess what? You’ll never guess! Shortly after I turned 35 I had a precious baby girl. Gahhh!! I’m tearing up right now! Emily is the name of my little miracle. My pregnancy was closely watched but was healthy, normal and very exciting! She was born healthy and continues to be a healthy sweet little two year old. Although I still have scleroderma and deal with struggles each day, I am counting my blessings by continuing to be healthy. Pushing myself each day to be in a POSITIVE state of mind has allowed me to make amazing strides.

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MY LIFE TODAY

Last year I became a fitness coach and I’m in the best health I’ve EVER been! I continue to eat clean and workout every day; I’d also totally be lying if I didn’t say, heck yes I struggle to workout some days. Heck yes I have to modify moves and take it slower – but becoming active and overall healthy about the things I can control has literally changed my ENTIRE life! Now I’m very passionate about coaching and helping other people change their lives to get healthy too – how amazing is that?! If you want it bad enough, you CAN do it! You really can!

I have everything I ever wanted. Well… I do carry scleroderma with me and I could definitely do without that. The one difference about it now though is I don’t let it define me. Yes, it’s what I have but it’s not WHO I am anymore.

It may sound cliché but life is truly amazing; it really is. Sometimes it’s sucky but it has made me a fighter, a strong person, a better person, an amazing mama and wife and I’ve learned to appreciate every moment.  We are all blessed in our own way; you need to fight to find yourself. Only then will you always see the beauty in everything – good and bad.

-Kelly Kohls

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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.

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

 

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

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.