Dear Family and Friends,
When I think back on this extremely important event, I realize the connections are so important and helpful for self and others--especially to meet someone with the movement disorder aspects of RSD/ CRPS which are not as commonly seen (muscle spasms, dystonia- being stuck in a fixed position, etc). This event, through RSDSA, brings together people from all over and raises awareness and money to support conferences where the same is being done--to bring minds together to come up with more successful imaging techniques, understanding and treatments.
For me, this year has been incredibly challenging and it is the first year that I will not be able to walk with the group. However, I will be at the event doing what I can to increase awareness and understanding. Who has heard of Reflex Sympathetic Dystrophy--now called Complex Regional Pain Syndrome? It has been studied for over 150 years, but has gone through over 20 name changes. Yet, prevalence rates range from 1.5 million to 6 million, with 50,000-78,000 new cases in the US each year.
CRPS is a progressive neurological condition causing neuroinflammation in the spinal cord and brain, affecting the sympathetic nervous system, immune system, limbic system, dystonia and dystrophy of muscle, bone, skin, circulation, causing burning pain, sensory changes, etc. According to the McGill Pain Scale, CRPS/RSD is rated as the highest pain rating, more painful than cancer, natural childbirth, and amputation.
For me, after being mostly in remission in the leg, unfortunately, an injection that was supposed to be into the stellate ganglion of the neck, was injected into the wrong place into the brachial plexus nerves that sent electrical shooting pain all the way around the arm to the hand and up the neck, jaw, throat and face. Instead of getting better, the symptoms have gotten increasingly worse, sending spasms to the jaw, burning and electrical pain all around the hand, arm, chest, and face, leading to erosion of my teeth, bone, and muscles. I am still awaiting the most promising treatment involving continous infusion of a medication.
Through all this I have fought to pass my licensing exam to become a licensed psychologist and am pushing through to work part time and use my skills to help others with chronic illnesses.
Please help support awareness, knowledge, and funding for this serious condition so that RSDSA can have more wordwide conferences to increase understanding of the disease, lead to better treatments, and maybe even a cure someday!
For those of you who want to better understand the movement components (specifically dystonia) of CRPS, follow the link below.
http://www.rsdsa.org/2/library/article_archive/pop/Oaklander_Neurology_2004.pdf
Also, click on the video link on this page to learn more about the sensory issues.
Thank you for visiting my fundraising page!
Donating through this website is simple, fast and totally secure, but if you feel more comfortable donating by check, you can make a check out to RSDSA.
Many thanks for your support! If you have any questions, I can be reached at designsbydaf@yahoo.com or at (914) 708-9229.
All the best,
Danielle Freudenheim
Don't forget to forward this to anyone who you think might want to donate too!