Katie Rusonis’ Senior Class Project fundraiser. Katie did this Motorcycle Run as her class project. Katie has RSD.

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

{ 2 comments }

Danielle Brown is a World and Olympic Champion.

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.

{ 0 comments }

RSD Hope Teens is part of the amazing RSD Hope organization run by Keith Orsini.  Along with Betsy Herman, Keith wanted to set up a place online where teens who have RSD / CRPS could talk to each other and encourage each other in their fight with RSD.

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.

{ 2 comments }

I have an inner strength building condition called CRPS, it turns your world upside down and sets a life long challenge, making the levels harder at will. I like to believe that I can win it over and get to the finish but know I need my friends to help me get there. – Alessea

Alessea is a truly inspiring third year student in Physiotherapy school who has been writing about her experience with RSD/CRPS since July of 2007 in her blog Smiles, Butterflies and Happiness.  But she doesn’t just write about having RSD, she writes about her life in a way that makes you forget that she’s in almost constant pain.

In her profile, Alessea says, “Some days it’s hard to remember why I push myself when it would be so much easier to admit defeat, but I’m determined not to let it rule my life. I am a fighter and a survivor!”

Alessea, you’re not just a survivor, you are a true hero who inspires all those with CRPS that not only can they survive, they can thrive and achieve great things.

Please check out Alessea’s blog and wish her the best of luck as she begins her third year of physio school!

{ 3 comments }

Caf is one of the most amazing people that you will ever meet.  She is truly an inspiration to all who suffer from RSD.

Her story is typical of many who have developed CRPS.  She developed reflex sympathetic dystrophy over two years ago after injuring her ankle.  Her ankle injury actually healed but then the pain came back worse than ever.

Since then she has devoted herself to promoting the awareness of RSD through her awesome blog Rellacafa.  Caf is an excellent writer and artist and she tells much of her story with the use of video.

Caf’s positive outlook and her sense of humor gives hope to all those suffering from RSD / CRPS.

Caf thank you for being such an inspiration and for promoting the awareness of RSD!

By the way, you can follow Caf on Twitter too.

{ 1 comment }

Lacy Berardi of Johnstown, PA has a story that unfortunately is typical of many teens and young adults who have RSD CRPS.  Her mother describes her as a typical girl who was a cheerleader and active in school.  She developed an unexplained pain in her back and within days became bedridden and could not stand to be touched.

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.

{ 0 comments }

It’s important for other teenagers and young adults to know that there are others out there who have RSD / CRPS and who are doing their best to have a normal life.

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!

{ 0 comments }

Delaney’s story begins like many other childeren and teenagers who get RSD / CRPS.  In May of 2006 as she was finishing 6th grade she had a bee sting on the bottom of her foot that got infected, she sprained an ankel playing soccer and developed strep throat.

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.

{ 1 comment }

Tonya Symonds is a 23 year old who has recently been diagnosed with Complex Regional Pain Syndrom (CRPS) or RSD.

When she was 12 years old she was diagnoses with fibromyalgia by doctors at Emory University Hospital in Atlanta.  When she was 15 she noticed that the pain was becoming more frequent.

Tonya who lives in Bermuda has been able to find relief from the pain by doing physical therapy in a swimming poo where she performs a variety of stretches and exercises.

Tonya’s hope is to overcome the pain so that she can continue her studies.  She is looking for an indoor pool in her areas to continue her physical therapy.

{ 0 comments }

The 2008 Quench the Fire 5K Run/Walk/Roll is hosted by the University of Southern California School of Medicine and will benefit the USC Pain Center in its goal to raise awareness of neuropathic and other chronic pain conditions such as Reflex Sympathetic Dystrophy. This is the 2nd annual event and is expected to be lots of fun and hugely successful.

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

{ 1 comment }