Plant a Seed

In Australia, the sunflower has become the symbol of scleroderma awareness—because those of us with the disease feel better in the warmth of the sun. I like this idea a lot. Enough, in fact, to consider trying my hand at planting some sunflowers, if not this summer, then next.

1428247_41776650Yesterday, on June 29, scleroderma associations around the globe marked World Scleroderma Day. In nearly two dozen countries in North America, Europe and Oceania, a month of awareness-building culminated with a host of activities, from hospital presentations and meetings of scientists to art gallery exhibitions and a social media series of 25 second videos, in recognition of the estimated 2.5 million people diagnosed with scleroderma worldwide. Today, June 30, the need for a cure will be presented to the European Parliament in Brussels.

June 29 is significant because it marks the death in 1940 of the brilliant artist Paul Klee, who suffered from systemic scleroderma. Klee’s later work was strongly influenced by his disease, even as his last few years were among his most prolific.

Paul Klee’s legacy helped to inspire the formation of the World Scleroderma Foundation, which is based in Basel, Switzerland, and draws together world experts in scleroderma research and patient groups in an effort to support research for a cure. The WSF’s lead patron is Klee’s grandson, Alexander, and his family.

While 2.5 million individuals with scleroderma represents just a sliver of the world’s 7.3 billion people, The WSF makes a compelling argument for the importance of scleroderma research on its website: Not only is the search for a cure needed for the millions who suffer from the disease—most of whom are women of childbearing age—but also scleroderma is a “linchpin disorder”: 

A breakthrough in understanding scleroderma would doubtless have a strong impact on many other diseases involving abnormal scarring and blood vessel injury. This might include conditions as diverse as interstitial lung disease, intestinal hypomotility disorders and many illnesses with blood vessel injury as their basis.

Which brings me back to sunflowers. Each sunflower head can contain as many as 2,000 seeds, each of which, in turn, with the right soil, sun and moisture, becomes another sunflower. If we could find a cure for scleroderma, imagine how many other millions of people who struggle with related diseases could be helped, as well.

Plant a seed to find a cure for scleroderma. Visit wolrdsclerodermaday.org to see what’s going on around the globe in support of research for a cure, or make a donation here in the U.S. to the Scleroderma Research Foundation or the Scleroderma Foundation. We’re all in this fight together.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com.

Comments

  1. Pat Bizzell says:

    Lots of fascinating info here, Ev. I know a little bit about Paul Klee, the favorite artist of my art-major college roommate, but did NOT know he had scleroderma. Also did not know about scleroderma being a “linchpin disease,” but it makes sense. Hope this fact helps make the case for more resources to be devoted to a cure.

    • Hi Evelyn,
      Thank you for posting this beautiful message about Scleroderma Awareness Day, and the Sunflower being the Scleroderma symbol in Australia. A couple of years ago, a woman from Australia attended conference here, and she brought sunflower coursages that she made and handed out to the people she met . The sunflower put a smile on our face, and brightened up our attire.
      I forwarded your message to everyone in my support group.
      Pat Gould
      Support Group Leader, Tucson, AZ

    • Thanks for this, Pat. And thank you for the picture of all of you smiling with your sunflower pins! I’m glad you shared this with your group. Best wishes to all of you.

    • Thanks, Pat. Paul Klee is a personal hero of mine.

  2. Matty Heenan says:

    Hi Evelyn,

    I was pleasantly surprised to open this link and see my co-leader was the last person to leave you a message! She did forward this particular blog to everyone in our group. I manage our Support Group page on Facebook, it is Scleroderma Foundation Tucson Support Group. I would like to post this blog on our page, too, but I wanted your permission before I did anything so public.

    Thank you for all you do!

    Matty Heenan
    Co-leader, Tucson Support Group

  3. Thanks for the post Evelyn . Lost my sister at age 35, so I know how much pain and suffering you all go through. She was diagnosed when she was two. It took 9 doctors to finally come to a diagnosis . Back then there was virtully nothing known about Scleroderma . The internet is a wonderful way to spread the news about this disease . I pray that a cure is not far off. Bless you all.

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