Raynaud’s Inspires Winning Entry in National Competition

Sixth grader Mackenzie Conkling didn’t need to look too far to find inspiration for her winning entry in the 2011 Bubble Wrap® Competition for Young Inventors.  The solution was right at hand.

At her mother’s hands, to be precise.  The 13-year old honor student from Massapequa, Long Island, created the “Uber Bubble Glove” – a glove to warm the hands of people affected by Raynaud’s Disease.  “When I was thinking of an idea for the contest, my mom walked in the house from work,” she explained.  “Her fingers were purple and blue and she kept complaining about how cold they were even though she was wearing a pair of gloves.  My mom suffers from Raynaud’s Disease.”

Thus inspired, Mackenzie produced a prototype of the Uber Bubble Glove, a product insulated by two layers of Bubble Wrap® material covered by a fleece glove.  Bubble Wrap® – the brand with the “pop” appeal — is “made of many pockets of air, which prevents the air surrounding and inside my glove from convecting because it is trapped in the bubbles,” Mackenzie wrote in her contest entry.  “Reducing the amount of heat that can be transferred to and from the glove, insulates it, keeping the wearer’s hand warm.”  [Read more...]

Raynaud’s Sufferers Wanted for Research Study

Survey is now closed.  We had an awesome response – thanks for your support!

Orion Pharma, a pharmaceutical company based in Finland, would like to gather information about Raynaud’s from people suffering from this condition.  The data gathered in the research will be used by Orion to help develop a new class of medication for Raynaud’s patients.

Specifically, Orion is looking to better understand the medical needs of people with Raynaud’s and how they cope with the condition.  Sufferers participating in the research will be asked to provide information on three main topics:

  • Background on your Raynaud’s condition
  • How you control the symptoms of Raynaud’s
  • Basic information on yourself (demographics, geography)

Here’s the link:  (Survey Closed)

We encourage Raynaud’s sufferers to take a few minutes and complete the survey.   It’s a great way to help the Raynaud’s community!

A Parent’s Story & Creative Solutions

After knowing for years that something was wrong but not having enough to go on to prove it, my pediatrician suspected that my then 5 year old had Juvenile Arthritis.   It took a long time to diagnose her- almost a year!

Eventually she was also diagnosed with scleroderma and mixed connective tissue disease.  Her new rheumatologist had recently put her on Naproxen and Methotrexate to help manage her pain and inflammation when we first noticed other changes.  I went in her room to help her with her socks when I noticed that she had one toe that was bright white.  By the time I called my husband in to look, it was back to normal.  A bit irritated with me, he went back to what I was doing like he didn’t believe me.  The next night he called me into her room.  This time, her whole foot was white.  As we were sitting there trying to figure this out, it started to change to purple.  Needless to say, we panicked!  I called her rheumy the next day, and they said that it was most likely Raynaud’s.   Eventually they were able to see first hand in the office, though just in case, I take pictures of her bad episodes and show them in the office or email them to the nurse.

[Read more...]

Stepping Out to Cure Scleroderma Walk in NYC

The Scleroderma Foundation/Tri-State Chapter is holding an upcoming fundraising event in New York City: 

Stepping Out to Cure Scleroderma
Manhattan Walk
Location:  Battery Park
Date:  Sunday, June 12th
Registration:  9:00AM          Walk: 10:15AM

For further walk or volunteer information call the Scleroderma Foundation/Tri-State, Inc. Chapter office at 800-867-0885 or email sdtristate@scleroderma.org.

My Journey with Acupuncture

YingYang CircleAfter my friend with Raynaud’s told me she had some success with acupuncture, I decided to give it a try.  Before sharing with you my experience to date, first a few caveats:

  • There is to date no accepted clinical evidence for the effectiveness of acupuncture as a treatment for alleviating Raynaud’s symptoms. I’ve found articles on the web both supporting and refuting trials using acupuncture to treat the condition.  Our Medical Advisory Board suggests that study design for many alternative therapies is unreliable (small samples, inconsistent methodologies, etc.).  So my voice on this subject is purely personal – I am not advocating acupuncture on behalf of the organization.
  • The placebo effect can’t be ignored. In clinical trials, placebos have been reported to account for as much as 40% improvement in patients.
  • No one treatment will work for everyone. Raynaud’s tends to be a very individual condition.  For every sufferer who tells me a nutritional supplement or dietary regime worked for them, another ten will tell me it had no impact.
  • Make sure your review all treatment strategies with your doctor first. You never know when medications or other issues will have negative interactions.

Now that we’ve gotten the formalities out of the way, I’d like to share with you my journey to date with acupuncture.

I started the treatments in late September of 2010 with an open mind.  I don’t know what I expected:  maybe a discussion about my Raynaud’s attacks followed by some needles inserted in my fingers and toes, but it wasn’t like that at all.   My therapist spent a great deal of time not only understanding my Raynaud’s condition, but also a lot about me – my personality traits, my accomplishments, my family relationships, my history with stress – it was a lot more mind therapy than I expected.  But then again, acupuncture is considered a mind/body treatment alternative, so I shouldn’t be that surprised. [Read more...]