Medical Condition: Complex Regional Pain Syndrome, Type 2
Medical Therapy: Spinal Cord Stimulation
Charity: Power of Pain Foundation
Twinkle was diagnosed in 2003 with Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy Syndrome (CRPS/RSD), a painful, debilitating and often progressive central nervous system disorder. A spinal cord stimulator has helped manage her pain, and she has expanded her advocacy efforts on behalf of those with neuropathic pain disorders from online to in-person events. As advocacy director and executive board member for the Power of Pain Foundation, Twinkle works on policy efforts, patient awareness and many other aspects of chronic pain.
"I was diagnosed with Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy Syndrome (CRPS/RSD) in 2003, following a mid-metatarsal separation of the right foot in 2001. CRPS/RSD is a painful, debilitating and often progressive central nervous system disorder. In my case, it caused skin discoloration; changes in nails, hair and blood vessels; swelling; muscle pain; bone deterioration; secondary internal organ involvement; and atrophy in my right calf.
“In 2003, I was already advocating, providing information and support for others with this condition through my website and blog. I had a spinal cord stimulator implanted in December 2006 after a successful trial. As a result of my spinal cord stimulation, by 2011 I was able to get out of my home to advocate in person.
“I've represented the Power of Pain Foundation through advocacy, awareness and legislative efforts as advocacy director and executive board member. I am a State Pain Policy Advocacy Network (SPPAN) leader and have been a member of the Prescribing Task Force with the California Medical Board since it was formed in 2013.
“When the Power of Pain Foundation found me, I began as its California ambassador. I assist others with questions about spinal cord stimulation and explain the importance of paying close attention to their trial implants and how to get the most out of their permanent placement. The Power of Pain Foundation strives to make a difference in policy, patient awareness and many other aspects of chronic pain through initiatives such as the RSD Quilt Program, Youth in Pain, the Honoring Our Vets program and much more. One of the foundation’s sayings is, ‘With motivation for a cure, we're turning pain to power.’ And it really is.”
“When you think you can't, maybe you already have.”
I use my extra life to raise awareness for CRPS/RSD and neuropathic pain diseases and disorders. I advocate for access to care and on legislative pain policy. Over the past 13 years, I have volunteered independently and with the Power of Pain Foundation since 2012.
The mission of the Power of Pain Foundation (POPF) is to educate and support chronic pain patients, specifically those with neuropathy pain conditions. The POPF provides community-based services that address needs of chronic pain patients.