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.

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!

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.

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.

If there is one thing I have learned from this, it is to never give up hope.  I might not ever be completely rid of the pain, but hopefully I will be able to walk again.  Any minor injury for the rest of my life could cause another episode of RSD, but I am stronger now because of what I am going through.  I did not choose to be afflicted with RSD, but I have chosen to deal with it and make something of my life in spite of it.

Brandy N. Sachs
August 2008

Brandy Sachs is an amazing 22 year old.  In 2007 she graduated from Millersville University of Pennsylvania with a double major in English and Philosophy and a minor in Criminology.  She’s also started graduate school at the University of Pittsburgh working toward a Masters degree in Social Work.

Amazing enough, but Brandy has accomplished all this since being diagnosed with RSD / CRPS since she was 13.

But there’s wonderful news about Brandy today.  To find out more go read all about Brandy at her website Hope For Brandy.

Then read about Brandy’s Ketamine treatment for RSD in Germany written by her awesome parents Lisa and Gordy.

Thank you Brandy Sachs for being such an inspiration to all those who are battling RSD!

After recently undergoing knee surgery, he began to develop classic symptoms of RSD.  Fortunately for Mike, his doctors are knowledgeable about RSD / CRPS and have already begun treating him.

As most of you know, it is extremely important to begin treatments for RSD immediately especially the desensitization treatments.  When the diagnosis of RSD is made right away the outlook is good for a complete recovery.

Please visit Mike at Mike n’ Mad’s Adventures and leave him a note of encouragement for his battle with RSD.