Katie raised $1600.00 for American RSDHope’s Research Fund!

She plans on going on to be a Physical Therapist after High School graduation in the spring of 2010. Katie has RSD in both legs, her hip and in her back. She has fought her way out of her wheelchair with the tough love and “insistence” of her loving mom, Carolyn. Katie is our second PA High School student to raise funds as a class community project for American RSDHope.

Thank you so much Katie and the very best of luck to you in your future as a physical therapist and in being the very beautiful person we know you to be.

Way to go Katie!  Congratulations on spreading the awareness of RSD / CRPS

In fact she set a new world record on her way to winning her second consecutive gold medal last month in the Para-Archery World Championships last month in the Czech Republic.

Danielle was a teenager when she was diagnosed with reflex sympathetic dystrophy RSD or as it is also know complex regional pain syndrome CRPS.  In Danielle’s case the RSD affects her legs and feet to the extent that she cannot remain standing for very long.

Prior to developing RSD Danielle was an active athlete in many sports.  She won her first Paralympics World Championship in Korea in 2007.  She went on to win the Gold Medal in the Bejing Paralympics.

In addition to being a World and Olympic Champion, Danielle Brown is a law student at the University of Leicester.  She has earned a number of sporting awards including  Sports England Awards senior athlete with disabilities and Disability Sport Events Yorkshire Regional Sports Person Award 2007.

Check out this BBC article about Danielle Brown’s win at the recent World Championships.

Keith and Betsy also moderate the RSD Hope Teen Yahoo Group.  It is a very active group of teenagers with RSD.  Everyone in the group is incredibly helpful and understanding.

Keith and Betsy have been through a lot wit their RSD, but with their determination and perseverance they have gone on to help so many people of all ages who have RSD.

If you are a teenager who has RSD or whose RSD is in remission or if you have a brother or sister or friend who has RSD and want to help them out by understanding what they are going through, please join this group and become active in it.

You don’t have to participate if you don’t want to.  Just by reading the post from other teens with RSD you will know that you are not alone.  And that is the most important thing to remember – You are not alone in your fight against RSD.

So please check out RSD Hope Teens and join the RSD Hope Teens Yahoo Group.  You will help yourself and others by sharing your own story about RSD.

Her parents became frantic contacting local doctors who had no answers and some who even said that her problem was all psychological so all they did was prescribe high doses of ibuprofen.

It wasn’t until three years later that doctors at the Pittsburgh Children’s Hospital diagnosed her with Reflex Sympathetic Dystrophy (RSD) or Complex Regional Pain Syndrome (CRPS).

As Lacy’s mother Vicki Walker said,”Physicians are not in tune with RSD.  That’s a huge problem.”

And this really is a huge problem that many kids with RSD are still not being diagnosed early.  Of course its difficult to diagnose RSD / CRPS because there are no easy blood tests or x-rays that can tell that a person has RSD.

The good news for Lacy was that once she was diagnosed with RSD she began months of intensive physical therapy which was necessary to “reboot” her nervous system.

Lacy’s RSD is now in remission and she has resumed a normal life of a thirteen year old.

But Lacy’s story reminds us that we should help make people aware of RSD/CRPS so that it can be diagnosed quickly so that treatments can begin immediately.

Sarah is a sophomore in high school at a boarding school in North Carolina who dreams of “one day monopolizing the broadway stage.”

If you read through her blog, A Normal Teenage Life With Pain, you will get to know Sarah and know that her dream will come true!

After you read about Sarah’s experience with RSD CRPS, please take the time to sign her petition to the U.S. Surgeon general to fund more research about RSD.

The Petition to fund RSD research was established by Sarah to help everyone who is suffering from RSD and chronic pain.

Sarah also has a good list of YouTube videos about RSD / CRPS that you can send to your friends and family that can maybe help explain what you are going through.

Best wishes to Sarah and look for her on Broadway!

Soon after she started having a pain in her hip that moved to her feet and then to her knees.  Her skin became so sensitive that the slightes touch caused pain.  As is common with these cases, her doctors were not sure what she had and prescribed light physical therapy.

Her RSD pain became so intense that she had to be carried to physical therapy by her parents.

Finally in 2007 she was diagnosed by Dr. David D. Sherry, director of clinical rheumatology at Children’s Hospital of Philadelphia.

Delaney made incredible progress in Dr. Sherry’s program.  Read the rest of Delaney’s story here.

Click here to find out more and to register for the 2008 Quench the Fire 5K Run/Walk/Roll.

Coaches, trainers and school nurses should be made aware of the symptoms of CRPS / RSD so that the athlete can be referred to a sports injury doctor who knows about RSD.

CRPS/RSD is believed to result from a malfunction of part of the nervous system that develops in response to an event the body regards as traumatic, such as an injury or surgery. Nerves misfire, sending constant pain signals to the brain. In addition to moderate-to-severe pain, tell-tale symptoms include hypersensitivity to touch, abnormal swelling, abnormal skin color, changes in skin temperature, sweating, limited range of movement, and movement disorders in the affected area.

RSDSA has an excellent brochure: CRPS/RSD and Sports Injuries:  Prevention is the Name of the Game.  Print it out and give it to your coaches and school athletic departments.

In 1994, researchers and physicians from the International Association for the Study of Pain (IASP) reclassified the terms. These are:

• CRPS type-I, which used to be called RSD (Reflex Sympathetic Dystrophy).
• CRPS type-II, which refers to people previously diagnosed as causalgia, who also have sustained nerve injuries.

The National Pain Foundation goes on to say that the actual cause of RSD/CRPS is still not known and while many people develop the syndrome in similar ways, there is no single known explanation. Symptoms may come and go in the early stages and it is unknown whether some individuals are more susceptible to CRPS than others.

A number of factors are linked to CRPS, but the leading culprit appears to be mild to severe trauma such as injuries or surgery. Something as simple as a sprain can lead to CRPS. Many people who sustain some type of injury may show signs of CRPS, while others become affected after surgery or after experiencing a painful event, such as a heart attack or an infection in an extremity such as an arm or leg.  People with neurologic disorders, such as multiple sclerosis, can also develop CRPS, as can those with more chronically painful conditions such as carpal tunnel syndrome.

A severe type of this disorder, CRPS type II, may develop when people injure a nerve or nerves in an extremity such as an arm, leg or foot. Examples of this type of injury are gunshot wounds and crush injuries. Nerve injuries often are characterized by numbness or tingling and/or sharp, shooting and aching pain in the skin supplied by the injured nerve. This kind of pain is described as “neuropathic” pain and can be confined to a small area of the body. CRPS is likely to be occurring when that pain spreads to other parts of the extremity and beyond and the autonomic nervous system becomes disordered.

People with CRPS can experience a wide variety of symptoms besides pain and autonomic dysregulation, especially in the early stages of the disorder. These may include skin discoloration, muscle spasms, swelling and stiffness, feelings of heat or cold, dryness or excessive sweating in the involved area, excessive hair growth and xcessive skin sensitivity to even the light touch of clothing (a symptom doctors call allodynia).  There also can be extreme sensitivity to temperature and joint movement. In the later stages severe complications, such as persistent pain, muscle atrophy and a decrease in regional bone density, occasionally with fractures (osteopinia), may occur.

According to the Reflex Sympathetic Dystrophy Syndrome Association of America (RSDSA), the future is looking brighter for people with CRPS due to promising research underway at institutions in the United States and throughout the world. This research involves studying the basic processes that cause the disorder as well as developing more effective treatments for CRPS.

After undergoing many treatments and therapies, Lindsay was able to start college this August 2008.

Read about Lindsay’s courageous battle with RSD on the website RSDBreathe.