Scleroderma Foundation Greater Chicago Chapter

Information and inspiration for scleroderma patients and caregivers. Serving people in Illinois, Wisconsin and Indiana.

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

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