RALLY FOR RYAN!!!
EB Awareness * EB Research * EB Cure

Rally for Ryan Fundraising Efforts

Ryan and I were fortunate enough to meet very special author, Dennis Vanasse, M.Ed., at a book signing. He was there promoting his two books, "I Am Special Too" and "Stand Tall Against Bullying."  Mr. Vanasse took the time to embrace my son, while I read the "I Am Special Too" book aloud. Ryan's eyes filled with 'happy' tears as he listened to the words.  He finally felt like someone understood him. 

These two books focus on acceptance of differences in children who are special. His book "I Am Special Too" profiles a 7 year-old boy who is in a wheelchair and has Cerebral Palsy. The aim of the book is education and teaching acceptance at a young age. His other published work, "Stand Tall Against Bullying" profiles a little boy who is bullied and sends a message of empowerment for those who are bullied or who may be exposed to bullying.  Mr. Vanasse has also traveled the Northeast speaking to elementary school audiences about the importance of both of these issues.
 
The author has so very generously offered to donate 10% of all book royalties to EB Research!!! Donations will be presented to the Jackson Gabriel Silver Foundation at the end of the first quarter of sales.

Click HERE to purchase "I am Special Too"
Click 
HERE to purchase "Stand Tall Against Bullying"

And also available at select Barnes and Noble stores and online
:
www.barnesandnoble.com

Please click HERE to visit the author's personal website

 PLEASE HELP SUPPORT OUR CAUSE!!
Stay tuned for our other ideas in spreading EB and special needs awareness!

*** 

On March 13, we participated in Rafi's Run for EB in NYC. Fundraising efforts brought in almost $1000 for EB Research!
On March 18th, 2012, I participated in the NYC Half Marathon to benefit the Jackson Gabriel Silver Foundation (jgsf.org)-an organization dedicated to helping find a cure for EB. For those of you who know me, you may think that I am much more likely to hand out water on the route than to run 13.1 miles, but I completed the course in 2:13:19 and raised a significant amount towards EB Research. I hope to join the team in other Half Marathons in a quest to find a cure for this devastating disease.

 For more information on how you can help, please visit
www.jgsf.org.

Thank you for your interest in epidermolysis bullosa, and for helping to support Ryan's courageous battle against EB. 

For questions or access to Ryan's updates and gallery, please email rallyforryan2009@hotmail.com
or leave a comment on the guestbook page.
Thank you!



Defying the Diagnosis:
Junctional Epidermolysis Bullosa



EB FEATURE:
 ITCH

Have a child with EB that just can't stop itching?  Know a child with EB that is so uncomfortable that they can't concentrate because the only thing to occupy their mind is itching? Wonder why EB causes the common condition known as pruritus? Hopefully this segment will help to explain itch as it is related to EB.

Itching (medically defined as pruritus) is a common manifestation of EB.  It is a significant obstacle for EB patients, families, and caregivers.  It interferes with the capability to concentrate, perform school work, play, and frequently interrupts sleep.  

Epidermolysis bullosa is a disorder that causes skin fragility.  This condition leads to chronic wounds and swelling (inflammation) that result in itching and pain sensations.  Studies on wound healing suggest that this state of inflammation can initiate changes in sensation in the nervous system that lead to increased sensitivity to pain and itch.

Itching (and pain) in persons with EB are real and somatic in nature. They cause the afflicted person to pick at their skin, scratch, and create even more significant wounds.

The significance of itching in EB is medically recognized. Stanford is currently conducting a trial to investigate causes and appropriate treatment for itch in this population.

http://dermatology.stanford.edu/gsdc/eb_clinic/trials/eb-itch.html

There are multiple causes of Itch in EB. Here are some of the main culprits:

  • All stages of wound healing
  • Iron-deficiency anemia
  • High Temperatures (above 70 degrees)
  • Humidity
  • Dry Skin
  • Discomfort and sweating under bandages
  • Environmental or medication allergies
  •    

    When asked about itch, the majority of children with EB mentioned that they really suffered from itchy skin. One severely affected child stated: “I think that the itch is so awful that you can’t even begin to understand… I wish I could just stop it, but I can’t.” And, “It’s (itch) almost always there, wherever I am.” Another child stated:  “I try as hard as I can not to scratch because I really know that scratching isn’t good…But sometimes it just happens, that’s what’s so awful.”

 Consequences of sustained itch include:

  • Further skin damage
  • Bleeding
  • Lack of concentration
  • Interrupted sleep/exhaustion
  • Frustration on the part of the patient, and dislike of being ‘policed’ for itching
  • Restlessness
  • Disruption of planned activities
  • Interruption of learning and school/not being able to follow a lesson plan due to continued itch distraction
  • Constant struggle of trying NOT to scratch
  • Caregiver burnout
  • Vicious cycle of itching/picking:

           

    Itching induces a need to scratch, which irritates the skin even more

    Worsen of existing wounds

    Creation of social consequences including interactions with teachers, schoolmates, friends, and family.

     

There are many recommendations for itch and EB, however, the unfortunate reality is that despite these interventions, most EB patients still suffer discomfort from itch.

Basic Itch Management:

  • Skin hydration
  • Avoid exposure to heat/humidity
  • Keep cool by staying in an air-conditioned environment
  • Minimizing exposure to allergens
  • Frequent bathing
  • Application of cool dressings
  • Certain medications

Psychological Management

  • Distraction techniques including participation in an activity that helps the child digress from itching.
  •    
  • Replacing itching with an alternate source of relief.  Patting or tapping an area is less violent than actual itching.
  •    

For more information on treatment, or to access the EB nurse, please click here

Ryan suffers terribly from itching. He was taught from an early age to ‘pat’ himself rather than itch. This has provided some source of relief for him. Unfortunately, Ryan’s skin and comfort level are greatly affected by heat and humidity, and he is most comfortable in temperatures at or near 70 degrees. Medications for itching are an option for most people with EB, but most have the tendency to cause significant drying of the eye, and Ryan has had multiple corneal abrasions secondary to this. So, he takes a small daily dose of a non-sedating antihistamine, but cannot tolerate any of the sedating (and more drying) ones.

Because Ryan itches, pats, and picks, he has been viewed as having a lack of concentration, and been deemed a non-listener, unable to follow directions. It is my hope that with awareness of this small aspect of EB, that Ryan, as well as other children with EB, do NOT have to suffer the social consequences of itch, as this should be viewed as ‘normal’ within the confines of EB. It is important to recognize that itching and picking are symptoms of this disease, and that they provide significant obstacles and distractions to those that are affected by EB.

 



 


All types of EB affect an estimated 1 out of every 50.000 babies born annually. 
The rarest form of EB is the Junctional subtype.  Reportedly, it affects approximately 1 out of every 7-10 million. It occurs in both sexes equally and is seen in all racial and ethnic groups around the world.

***
Welcome to Holland

 
I am often asked to describe the experience
of raising a child with a disability - to try to help people who have not shared that unique
experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All
my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've
landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different
place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a
wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." 

And the pain of that will never, ever, ever, ever  go away... because the loss of that dream is a very very significant
loss.

Copyright ©1987 by Emily Perl Kingsley. All rights reserved. Reprinted by permission of the author.



Thank you for taking the time to visit my website, and for learning about EB. For more information, please visit:

DebRA
Stanford Clinic
EBMRF

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Ryan was born with a rare genetic condition called Junctional Epidermolysis Bullosa (abbreviated- EB or JEB). This condition makes his skin so fragile that it blisters with pressure and friction. His body is wrapped in dressings to prevent blisters and resulting wounds. The dressings also help him to heal. We have to be extremely careful with handling Ryan. Just the slightest touch, or rub, or movement can cause a wound to occur. As an infant, he spent most of his days on special blankets or fleece padding to protect him. Now, he carries a blanket for extra padding when he sits or needs to be lifted. Ryan needs to be scooped up, and can never been picked up under his arms. He never used a jumperoo, never crawled, and learned to roll over after he turned two. Fragile skin and wounds prevented him from doing so. 

Ryan is an extraordinary boy--he is fun-loving, and happy. He most always has a smile on his face, through all of his tough dressing changes, he rarely complains
. While EB obstacles can sometimes be overwhelming for us as parents, we feel that it is nothing compared to Ryan's courage, strength, and ability to overcome. What he has to endure, and his attitude towards it, is absolutely awe inspiring.

Having a child with epidermolysis bullosa changes everything, and challenges even the most positive person's outlook on life. Every day with Ryan is a gift. He has forever changed me and taught me how to love life to the fullest, and to enjoy one
another. He has taught bravery, strength, and the power of love. We are truly blessed with this little being--and strongly believe that he was born for a reason.  

Ryan has proven even the experts wrong thus far, and we certainly hope that he continues to do so.

Birthday celebrations for people with EB can be extra-special milestones.

Ryan is... FIVE!

 
Ryan is...FOUR







Baby Boy!


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