You all may be Aware that last year our daughter Adela was diagnosed with CRPS/RSD after what should've just been a "minor injury". That minor injury turned in to our "worst Nightmare"
CRPS/RSD has been around since the Civil War & yet most people have Never heard of it. To top it off Most Doctors aren't Aware of it, "Let Alone How to Treat it"
What is Complex Regional Pain Syndrome ?
("According to National Institute of Neurological Disorders and Stroke")
Complex regional pain syndrome (CRPS) is a chronic pain condition that is believed to be the result of dysfunction in the central or peripheral nervous systems. Typical features include dramatic changes in the color and temperature of the skin over the affected limb or body part, accompanied by intense burning pain, skin sensitivity, sweating, and swelling.
Older terms used to describe CRPS are "reflex sympathetic dystrophy syndrome" and "causalgia," a term first used during the Civil War to describe the intense, hot pain felt by some veterans long after their wounds had healed.
CRPS can strike at any age and affects both men and women, although most experts agree that it is more common in young women.
What are the symptoms of CRPS?
The key symptom of CRPS is continuous, intense pain out of proportion to the severity of the injury (if an injury has occurred), which gets worse rather than better over time. CRPS most often affects one of the extremities (arms, legs, hands, or feet) and is also often accompanied by:
increased skin sensitivity
changes in skin temperature: warmer or cooler compared to the opposite extremity
changes in skin color: often blotchy, purple, pale, or red
changes in skin texture: shiny and thin, and sometimes excessively sweaty
changes in nail and hair growth patterns
swelling and stiffness in affected joints
motor disability, with decreased ability to move the affected body part.
Adela's CRPS has spread to her entire body. She's not able to walk long periods @ a time. We have to constantly be careful how we hug her/ touch her. No Parent should have to feel the pain of watching their child hurt so much. Adela was a very active young lady up until her injury ,now she Struggles just getting up & trying to make it thru the day.
Adela's Pain Management Team & Doctors tried giving her a 2nd Spinal Lumbar Nerve Block, unfortunately her body rejected it & her Drs. don't know why. They had her do aggressive physical/occupational therapy thinking that maybe they can re-train her brain. Unfortunately that did not work & she continues to be in pain. In other words Adela's Doctors here have nothing else to do for her. So this is where I'm determined to find some relief for my daughter. We know that as of Now their is NO Cure for CRPS/RSD but their are treatments that may be able to help ease some pain for periods @ a time. Unfortunately when it comes to these treatments Most Insurances DO Not Cover the cost.
A Doctor in Rhode Island has Highly been recommended to us for Adela. Our Goal is to Raise Awareness & Money to cover the cost of getting Adela out there & treated by Dr.D'Amato. The money will be used to pay for the flight, hotel stay & the daily treatment that Adela will have to under go anywhere up to 3 weeks if she's a "responder" to his treatment.
I'd like to THANK YOU ALL Very Much for taking the time to read this.
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