We have thought long and hard about how we want to describe RND.  After a while, we decided

to leave the scientific explanations to the doctors. To the right is Pittsburgh UPMC Physician,

Dr. Pletcher.  He spoke at the 'Molly's Ray of Hope' event.   Also, Dr. Sherry of Children’s Hospital

in Philadelphia is a leader in his field.  He provides a great and simple explanation

on the CHOPS website. Please visit this link to learn more:

http://www.chop.edu/service/amplified-musculoskeletal-pain-syndrome/about-amps/

 

Now, that being said, we want to give this disease a face. You know, make it personal. We intend to speak honestly, but our goal is not encourage self-pity, or paint a picture of doom and gloom.  The reality is a difficult pill to swallow, but we encourage you to inform yourself, get real, and hunker down for the fight of your life!  Stay positive, create goals, work hard, never give up, and accept the challenge!  Collectively, we can empower each other!

 

Truth be told, RND is an invisible condition, provoking pain in one part of the body, or throughout.  It can begin with an injury, but not always.  Metaphorically, it hides behind the curtain, and is difficult to diagnose.  Children with this ailment look perfectly normal.  One day they can be up and running, but the next day they are unable to get out of bed.

 

Based on the many stories we have shared with other RND Warrior families, we can tell you that some children have been subjected to multiple tests, blood work, and even visits to the psychologist.  Why?  Because there is no test that clearly pinpoints the condition!  It is through the process of elimination, and other criteria, that professionals are able to conclude it is RND.  Sadly, this disease is fairly new (in terms of having a name) and many doctors are still unaware of the diagnosis.  Some children are even subjected to doubt--be it with their parents, the doctors, or mental health specialists. Imagine how terrible that must be for a child to feel so isolated and misunderstood?  Really, stop for a moment and think about that. 

 

Even upon diagnosis, individuals who are not educated on the topic, sometimes continue to diminish the pain.  We know of families who have had to fight school districts, children who are ridiculed by friends, etc. Let us be clear, the pain is REAL and NOT in their head.  As a matter of fact, it rates highest on the McGill pain scale in terms of Amplified pain.   RND hurts more than childbirth.  To make matters worse, there is no cure, nor do medications typically help to alleviate the pain.  In our humble opinion, these kids should be respected for their ability to bravely face the adversity of a terrible affliction; instead of being criticized.

 

RND rears its ugly head when symptoms surface.  Children not only suffer with inexplicable pain, but other problems as well:  headaches, shaking, stomach pains, chest pain, depression, poor concentration, memory loss, insomnia, black and blue marks, swelling, skin color changes, skin temperature changes, dizziness, loss of appetite, insomnia, waking up in the night, and fatigue. No child presents the condition the same.  One child might have the pain in only part of the body; another will have it all over.  Some kids have terrible nausea, while others get the swelling.  There is no consistency from one patient to another.   However, there are some common denominators such as the severity of the pain, or many stop attending school and their grades suffer.  Kids just fall further and further behind.  The pressure to get up and function is tremendous, let alone be in a constant-state-of-catching-up with schoolwork.  That--combined with countless RND related medical visits--is exhausting for everyone.  Are you ready for the kicker?  Pain flares associated with Reflex Neurovascular Dystrophy can be triggered with stress.  Talk about being stuck in some sort of vicious hamster wheel!

 

Parents feel helpless, as they watch their child’s health deteriorate in front of them. It is complicated by a lack of diagnosis, or misdiagnosis.  The cost and commitment of physical therapy and doctors’ visits is daunting. Relationships with school districts can sometimes prove to be difficult and parents find a need for an educational advocate.  It can be overwhelming.  It will change your life.  In spite of this, you must remember, there will be no better advocate for your child but you!  

 

More often than not, families have no one to compare notes with.  They don’t know anyone else with the same affliction.  For example, did you know that it is possible to get Medical Assistance with RND?  Sometimes, organizations also have funds in place to help low-income families with  PT visits.  Did you further know that children with educational needs are safe-guarded not only by local and state laws, but the ADA and FAPE as well?  Are you aware of the different hospitals in the nation that have treatment programs?   Can’t get your child out of bed?  That is common.  Have you noticed a correlation between weather changes and the pain?  We have! (Although we don’t know if there is any research to validate that Mother Nature has an influence.) 

 

Renea Holden, founder of ‘Molly’s Ray of Hope’ wants to nurture a support network for families to engage with other families.  “We want to be a resource for you! Parents empowering parents! Molly’s testimonial provides a beacon of hope.  We hope that you will find strength in it. Use it to motivate your family, and keep your eye on the prize:  Hard work, commitment, and healthy support, equals functionality.

 

"We will leave the science to the doctors, but our mission is to raise awareness, educate the public, engage the health community in conversation, provide support and information to children and parents, and raise funds for treatment and research.  Responsible dissemination of information, along with building support amongst families, and offering encouragement through inspiration and fellowship is our formula for success!  We want to be a resource for all the other families out there who feel just as alone as we once did.  The good news is, ‘You are no longer alone!'"

 

Information on POTS will be posted soon!