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Welcome to the Minnesota Chapter Website!

We are dedicated to providing support for people living with scleroderma, caregivers, and the general public. We want to help enhance the quality of life for patients

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Welcome to the Minnesota Chapter Website!

We are dedicated to providing support for people living with scleroderma, caregivers, and the general public. We want to help enhance the quality of life for patients

blue-shirts

Welcome to the Minnesota Chapter Website!

We are dedicated to providing support for people living with scleroderma, caregivers, and the general public. We want to help enhance the quality of life for patients

orange_walk

Welcome to the Minnesota Chapter Website!

We are dedicated to providing support for people living with scleroderma, caregivers, and the general public. We want to help enhance the quality of life for patients

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Welcome to the Minnesota Chapter Website!

We are dedicated to providing support for people living with scleroderma, caregivers, and the general public. We want to help enhance the quality of life for patients

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2017 Patient and Family Health and Wellness Conference

CLICK HERE TO REGISTER

2017 Conference


Join us Saturday, October 21, 2017 for our annual Patient and Family Health and Wellness Conference. This is a free event offered to all patients, families and the public. Registration is required. Please register by October 7.

Keynote Speakers:

Tracy Frech, M.D., M.S.
"Gastrointestinal Tract Management in Systemic Sclerosis"
Dr. Frech serves as the Director of the Systemic Sclerosis Clinic at the University of Utah Hospital and is the Director of Clinical Trials for the Division of Rheumatology. Her research interests include the vascular aspects of autoimmune disease, primarily progressive vascular dysfunction and resultant fibrosis in SSc.

David Leader, D.M.D., M.P.H.
"What Your Dentist and Rheumatologist Want to Know About Scleroderma"
Dr. Leader is an Associate Professor and Lead Practice Coordinator at Tufts University School of Dental Medicine. He is a Fellow with the American Dental Association Health Policy Institute and has worked with the Scleroderma Foundation as a speaker and an advisor since 2005. 

Breakout Session Presenters:
  • F. Anthony Mannella, Attorney at Law, Midwest Disability, P.A. - "Navigating The Social Security Disability Process"
  • Chaplin Edward Holland, A Respecting Choices© Advance Care Planning Facilitator - "Healthcare Directives and Why, 'It Always Seems too Early, Until it's too Late'"
  • Susan Duhamel, B.S., AARP Minnesota Volunteer - "Prepare to Care: Support for Caregivers"

 

The Health and Wellness Conference is generously sponsored by:

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Capp Industries and Affiliates

 

Streamworks logo

 

 

 

zumba volunteers

Become a Volunteer or Sponsor

Click here for more information.

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About Us

Our Mission:

The mission of the Scleroderma Foundation Minnesota Chapter is threefold:

  • To provide educational and emotional support to people with scleroderma and their families;
  • To stimulate and support research designed to identify the cause and cure of scleroderma as well as improve methods of treatment and;
  • To enhance the public’s awareness of this disease.

 

 

 

 

 

Contact Information:

Scleroderma Foundation, Minnesota Chapter
P.O. Box 240244
Apple Valley, MN 55124

Phone: 877-794-0347
Email: MNChapter@scleroderma.org

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Board of Directors: 

Meredith Allister, President
Eva Felix, Vice President
Kara Luebke, Secretary
Bonnie Handmacher, Treasurer

Andrea Bond 
Dawn Matuza
Elaine Robashkin
Sue Zeigler

Dr. Jerry Molitor, Medical Advisor

Karen's Scleroderma Journey

Karen“I was skiing in the UP of Michigan. I’d never had a problem with cold in my life. But I was just in tears, the cold was so painful,” remembers Karen of her first scleroderma symptoms. After two years of extreme reactions to cold, fatigue, and swelling, Karen was diagnosed with scleroderma in 2001.

Before scleroderma, Karen was extremely active. She worked full time in rehabilitation services and then healthcare marketing. Every year she took a mountain biking trip out west with her husband. She enjoyed hiking, book club, dinner club and was a member of the Twin Cities bicycling club.

As is the case with each fighter, scleroderma has taken a lot of her old activities from her. At first she says, “I was in denial. I was in denial for a long time. I didn’t think it would last, no matter what I read. At the time doctors didn’t know a whole lot about it. I couldn’t say the word for two years without crying. It was devastating.” Her low point came later in 2008. She contracted pneumonia and spent two months in the hospital on a ventilator. Her lungs had shut down. Many thought she wouldn’t survive, but she says, “I came out on the alive side.”

She spent years recovering from the bout with pneumonia. She stopped working, needed a walker and oxygen. Slowly, she improved. But life with scleroderma is markedly different from her life pre-diagnosis. Small things, like going down the stairs, depend on her oxygen supply. Her ability to travel is limited.

But Karen is coping and has found joy in new activities. In 2009, she moved to Florida for winters to escape both the cold and flu that come with Minnesota winters and the scleroderma symptoms exacerbated by extreme cold. And, she “LOVES it.” She took up kayaking – something she can do with oxygen – and made new friends in Florida. Since 2009 she has lead one of Scleroderma Foundation Minnesota Chapter’s support groups in order to give back. She says she encourages scleroderma patients to stay active as much as possible. She enjoys both Zumba and yoga. Her advice to those newly diagnosed is to “Find a good doctor, and surround yourself with people who care.”

Karen kayaking

Her latest journey was undergoing a stem cell transplant. Denied from the program in 2014, she reapplied in 2016 and was accepted as a candidate. She spent 6 weeks in Chicago for the transplant, which involves chemotherapy to remove a patient’s immune system. The immune system is then “regrown” from their own scleroderma-free stem cells. “It was very invasive and awful to go through. Lots of chemo. But I came out on the better side. I noticed changes right away when I was in the hospital. I noticed skin and tissue softening. I wasn’t coughing as much - I used to be coughing every 30 seconds.”Karen discharge day

And Karen’s hopes for the future? “I hope more and more people will reach out to the Scleroderma Foundation and learn what is available, educate themselves, get themselves to a support group. And, I hope more rheumatologists and primary care doctors learn about the disease and can recognize it more quickly. [Scleroderma] is a disease that deserves more dollars to look for a cure - something that can halt this disease in its tracks.”

Thank you, Karen, for your bravery, giving back to the scleroderma community as a support group leader, and for sharing your inspirational story.

 


 

A very special thank you to our generous sponsors 

National Sponsors

Actelion 2017 logo
Bayer 2017 logo
Reata 2017 logo
 

2017 High Stepper Sponsor

Ergodyne

2017 Walk Sponsors

WCCO logo

 

Streamworks logo

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