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LEGAL EUTHENASIA OF SEVERELY DISABLED NEWBORNS
Please read the articles below concerning the legal euthenasia of severely disabled and suffering newborns in the Netherlands, including those born with EB. Below I have posted my opinion on the subject, feel free to visit my Message Forum to voice your views.

Doctors: let us kill disabled babies
College urges euthanasia for sickest newborns
UK experts call for debate on euthanasia for seriously disabled newborns
Haunted mother who backs mercy killing
Euthanase disabled babies, say doctors
UK Docs: "Active Euthanasia" on Disabled Newborns Will Cut Abortion Rates
All Things Are Permissible

First I must say that I have never been a parent and can not even imagine how horribly difficult it is to see your child suffer. But I do know what it's like to be that child. I was born with one of the most severe forms of Epidermolysis Bullosa. I've always been so grateful to be alive but after reading the recent stories about infant euthanasia I am now also grateful that my chance at life was not taken from me. EB is a very painful, debilitating condition to live with that does in fact effect the whole family. And yes, many days are full of pain, challenges and may be unbearable or even hopeless. But there are also days of joy, love and laughter.

It is my CHOICE to keep fighting and surviving and all children should be given that right and choice. No one else should make that decision for them. I believe that even infants can choose to give up if it is just too much for them to handle. If they choose to keep fighting and surviving then all the parents can do is give them the best care they can and take each day at a time. If it is too much of an emotional or financial hardship for the parents shouldn't giving that baby up for adoption to a family who can offer the love, support and patience be an option way before euthanizing a child? Who knows what wonderful person that baby could become, what they could accomplish if only given the chance to survive. I have known many with EB who's lives were seemingly cut short by this disorder, but what they accomplished in life despite having EB has been an inspiration to countless people. They were still able to find joy in life and be thankful for what they had. This world is a better place because of people like Jonny Kennedy and others who made the best out of their life and chose to help others despite their own limitations.

If we allow infant euthanasia where would it end? Would all children born with severe forms of EB have their chance at life taken away? Doctors told my mom I would only live to the age of 2 and here I am 23. I feel so blessed to have a mom who took me home, gave me great care, took one day at a time and taught me that I can do and be whatever I dream.

A person can not judge another's suffering. Even parents of children and adults who are severely disabled still do not know what it's like to be in their child's shoes. Life is never easy. We are here to learn and grow from life's challenges. No one should have the right to take away another person's right to learn, grow and live.

"Out of suffering have emerged the strongest souls; the most massive characters are seared with scars."
Kahlil Gibran

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EB Newsletters:
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DEBRA OF AMERICA - Fall 2006, Summer 2006, Spring 2006 

BEFRIEND EB - October 2006

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EB Events and Fundraisers:
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Upcoming:

April 14th, Patchogue, NY - A GRACEFUL EVENING - A dinner to bring the friends and family of Grace Peshkur together and raise funds for The Grace Peshkur Foundation. Learn More At:
OUR GRACE

April 19th, Atlanta, GA - BUTTERFLY WISHES FOR ELLIE - A Low Country Boil & Bluegrass Bash in honor of Ellie Tavani. Learn more at: BUTTERFLY WISHES FOR ELLIE

April 20th, Pottstown, PA - BASKET BINGO FOR EB - A night of Bingo for Longaburger Baskets as prizes! Proceeds go towards DebRA. Learn more by contacting HOLLYE WAGNER

April 21st, Lakewood, Ohio - THE BUTTERFLY EFFECT - An art show with a silent auction and raffles designed to raise money for DebRA. Learn more at: THE POP SHOP GALLERY & STUDIO

May 19th, Newport Beach, CA - AMAZING RACE FOR EB - Get ready for the second annual Noelle Hermes Foundation Amazing Race for EB!!! It will be held this year on Saturday, May 19, 2007 at the beautiful location of the Newport Dunes in Newport Beach, California. Patterned after the Award winning TV show, The Amazing Race. 5-person teams competing against other teams in 6 different events. Be prepared to use your brain, your brawn and anything else necessary to propel your team to victory and grab one of the great prizes for the top 5 teams. The event is designed so that EVERYBODY, regardless of age or physical fitness level, is able to participate. The day will go from 9 am to 5 pm, and besides all the wacky and crazy events, will include lunch, dinner, raffle and team awards as well as awards to the top 5 people who raise the most money.

Bring your family and friends to laugh, have fun and raise funds to help in our fight against EB. The money you raise will help alleviate the financial burden of EB to numerous EB families. You can make a difference!

Each person is responsible for raising $250 for the Noelle Hermes Foundation. Anyone 18 and under or college students are responsible for raising $150. We have forms and letters to help you raise the money. Last year we had several people who raised over $1000, the highest person raised $4700!

Visit the Noelle Hermes Foundation website for Registration Forms, Fundraising Letters, Sample Call Letter and Sponsor Form.

Current:

Coco Eyeshadow by Cargo - Sold at Sephora.com

About the eyeshadow: Five fun, playful
shadow shades allow for the creation of
soft, summer eyes. Each shadow is sheer,
blendable, and can be worn sheer or layered
for added intensity.Shades include:
Opalescent Petal Pink, Starlit Periwinkle,
Deep Amethyst, Shimmering Golden Kiwi,
and Midnight Black.

CARGO will donate 100% of the sales from this eyeshadow palette to go to the EBMRF!

Thank you Courteney Cox for creating this
eyeshadow and thank you Cargo and Sephora!
Click HERE to learn more and to purchase this
eyeshadow!

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         NuSkin Epoch Product Line
A donation of $.25 from each sale of three products
from the NuSkin Epoch line: Firewalker, IceDancer
and Glacial Marine Mud, will be donated to the EBMRF.
To purchase these products and make a difference for
EB patients, visit NuSkin.

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            Life Lessons for Busy Moms
Help co-authors Debby Britticks, Dorothy Breininger and
Lynn Benson support the EBMRF while you organize and
balance your world. Just choose "EB Foundation" from the
dropdown menu when ordering your copy and a percentage
of the sales of this book will go to the EBMRF! BUY NOW!


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Ralph's Grocery Store
You can support the EBMRF with just the swipe of a card! If you or friends and family members are a Ralph's Club Card member, your card could earn hundreds of dollars for EBMRF Just log onto www.Ralphs.com, click on Community Contribution, Click on Participant, enroll your information, including the EBMRF charity number -81963 and you're done-now sit back and shop for EB!
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The TPD Project
Chris, AKA The Magic PEZ Man started an organization called the TPD (Traveling PEZ Dispenser) Project which helps raise money for worthy causes including EB! They have chosen a special PEZ Dispenser called Color Crystal Florence Flutterfly PEZ® Dispenser and named it Dylan after a little boy from New York with EB and currently has over 300 Pez dispensers! Dylan the butterfly pez dispenser is sent all over the world along with a journal where people can write in it and take pictures to show where Dylan has been. The butterfly PEZ dispenser began it's travels on October 22nd, 2005 and has travelled to many exciting places and has been hosted by some very special people.
To see where Dylan has been you can view his Journal and Photo Album!
To sign up to be one of the participants or to donate money to the cause, please visit the Traveling Pez Dispenser Project website.100% of the money raised (minus paypal fees and an occasional shipping fee) through this project will be split evenly between the Epidermolysis Bullosa Medical Research Foundation (EBMRF) and The Dystrophic Epidermolysis Bullosa Research Association of America (DebRA).

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More People Raising Funds:
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3/29/07 - Students raise 'EB' awareness, funds

3/15/07 - dearjohnnies Gowns Go Hollywood Again at Los Angeles Exclusive Event The Boom Boom Room's Baby and Big Kid Style Villa Celebrating the Golden Globes

3/12/07 - K of C Makes $1,000 Donation to DebRA

2/19/07 - An "Amazing" Sunday

2/19/07 - Princess Ball raises nearly $1,500, helps local boy

Please click HERE (coming soon) for more EB Events and Fundraisers!

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EB on TV:
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Medical Incredible - The Medical Incredible episode featuring a story about me and EB still airs occasionally on the Discovery Health channel. The title of the episode is Butterfly Skin, check your local listings for dates and times... MORE

The Boy Whose Skin Fell Off - The Boy Whose Skin Fell Off is a documentary about 36 year old Jonny Kennedy who was born with Dystrophic Epidermolysis Bullosa. Originally airing in the U.K. it has now been... MORE
UPDATE: Coming soon to DVD here in the U.S., please click HERE to put your name on the waiting list

Please click HERE (coming soon) for more shows that featured EB!

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EB in the News:
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3/21/07 - Plea for research into baby's terminal illness

3/1/07 - Toddler who can not be cuddled by mum

2/18/07 - Handled with care

2/16/07 - For Eric 

2/10/07 - Real hope of cure for butterfly girl Adana 

Please click HERE for more EB news articles!

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EB Blogs:
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10/30/06 - Bertrand Russell Is My New Boyfriend

10/26/06 - Shrouded by Darkness

10/26/06 - You think your life is hard?

10/26/06 - Irish Lass's Ramblings - My Wednesday



Please click HERE (coming soon) for more EB Blog links!

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EB in Magazines:
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The October 16 issue of People Magazine features Rachel Nasuti at the grand opening of the Ken Paves Salon in Beverly Hills! Many stars attended including Eva Longoria and Jessica Simpson. (Sorry, no pics or links yet)




Please click HERE (coming soon) for more EB in Magazines!

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EB RSS Feeds:
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EB Videos:
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Access Hollywood

























































Please click HERE (coming soon) for more EB Videos!

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EB Music:
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I wrote a poem that a wonderful singer                        
named Mary Lee Dazey offered to put
to music. Please visit her website!    
                   Butterfly Child                                                          (Press play to hear song)
      Written By: Cristina Perez
       Sung By: Mary Lee Dazey
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Jamie Gibson-Hartley was born with RDEB and an
amazingly beautiful voice! Her CD "Good Night Christmas"
is on sale now and ALL the proceeds go to the EBMRF.
Keep a lookout for her upcoming CD "Wondrous Discovery"!





Camilla's heartfelt lullaby “Better Place”, written after she
learned of the tragically premature passing of a child
stricken with Epidermolysis Bullosa, captured the thoughts
of a nation and comforted those who mourned. The song
served as the theme to the 2006 documentary on the child
and the disease and has been featured on Europeon TV. It
also catapulted Camilla to the top twenty list on MySpace
music, besting the likes of Usher and Ashlee Simpson. With
a full length album and international tour dates set for
2007, Camilla is poised for success on a grand scale.



Katora Jenee - age 14 with RDEB - "I am determined to
become a R&B/Gospel Singer. I have accepted my
condition and still will continue to pursue my hopes and
dreams and I know with Gods help I will succeed. To
myself I have a strong heart and a relentless passion and I
am glad that through this I have both my parents to stand
by me through whatever path I end up on. I hope that I will
be heard and give hope to all the other people in the world
living with the same condition or any other condition."


Please click HERE (coming soon) for more EB Music!

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EB En Espanol:
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                                                                                                 DebRA America En Espanol
                                                                                                 DebRA Chile
                                                                                                DebRA Costa Rica
                                                                                                DebRA Spain




























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International EB News:
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U.K.










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EB Research:
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DebRA of America - RegeneRx EB Wound Healing Drug Study

DebRA International - Current Funded Research

DebRA International - Genetic Research

DebRA International - Cancer in EB Research

DebRA International - Wound Healing Research

Stem cell research and EB – what does it all mean?

Stanford EB Research Update

10/12/06 - RegeneRx Receives Australian Tβ4 Patent for Treatment of Epidermolysis Bullosa

10/10/06 - Amniotic Membrane Transplantation in Children With Symblepharon and Massive Pannus

9/30/06 - FDA Issues Approvable Letter To Ortec For Use Of Cryopreserved OrCel(R) In Epidermolysis Bullosa Patients' Hand Reconstructions And Donor Site

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Please click HERE for more EB Research!

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Link to my Site:
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You can use the banner below to link to my site. Please link it to www.ebpatient.com




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Spread EB Awareness:
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One way you can help spread EB awareness is by adopting an EB awareness fairy or blinkie like the ones shown below. Please click HERE for the adoption rules and to see all there is to choose from! Also don't forget to visit the EB Awareness Shop!














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Site Stats:

EB Community Visitor Map!
MYSPACE BLOG
This website is provided for informational purposes only and is not meant to take the place of advice provided by your own physician or other medical professional. Do not start or change your health care routine without first consulting a qualified physician. EBPatient.com and it's affiliates are not responsible for the content provided on any sites that EBPatient.com may link to. EBPatient.com does not necessarily share the views and opinions of those sites or of the user comments and stories submitted to this site or this site's message forum.

EB Medical Research Foundation
EB Action Network
DebRA - Dystrophic EB Research Association of America
Children's Skin Disease Foundation and Camp Wonder
Kisses for Katie
Kisses for Katie
DebRA Store
The DebRA store features EB awareness teddy bears and EB friendly clothing.
EB Awareness Stretch Bracelets
By Princess Silvia.
$1.00 from each bracelet will be split evenly between the EBMRF and EBAN and the rest will go to help Silvia maintain EBInfoWorld.com and to help her son Nicky, born with RDEB.






DebRA Ireland Butterfly Jewelry
You can purchase beautiful butterfly necklaces, earrings, bracelets and charms on the DebRA Ireland website. Click HERE to learn more.

DebRA International
ITALIAN GENE THERAPY RESEARCH YIELDS RESULTS IN A PATIENT WITH JEB
An Italian research team has treated a 36-year-old man with Junctional EB with skin grafts that contained corrected copies of the laminin-5 gene... Please visit the DebRA website to read more.

EB WOUND CARE PETITION
Please sign the EB Wound Care Petition to help EB patients get the medical supplies they desperately need but often can not get. Please go to the EBAN website to sign the petition!
DebRA UK EB Butterfly Pin and DeBRA Beanie
You can purchase this EB butterfly pin on the DebRA UK website. Click HEREto learn more.

Visit my EB Awareness Store I've designed some EB awareness products, including clothing, pins, bumper stickers etc. They can be found at my CafePress store.

Search the Web or This Site
MY VIDEO DIARY

Coming Soon
Updated - 3/7 - The EB Message Forum has been revamped and updated with new categories and features including a chat room. All comments and suggestions are welcome to make the forum better. Please e-mail me if you're interested in being a moderator for the board.

New - 3/7 - Check out the new EB Friends Network! Made courtesy of The Magic Pez Man! Thank you Chris!

Event - 2/20 - Get ready for the second annual Noelle Hermes Foundation Amazing Race for EB!!! It will be held this year on Saturday, May 19, 2007 at the beautiful location of the Newport Dunes in Newport Beach, California. Patterned after the Award winning TV show, The Amazing Race. 5-person teams competing against other teams in 6 different events. Be prepared to use your brain, your brawn and anything else necessary to propel your team to victory and grab one of the great prizes for the top 5 teams. The event is designed so that EVERYBODY, regardless of age or physical fitness level, is able to participate. The day will go from 9 am to 5 pm, and besides all the wacky and crazy events, will include lunch, dinner, raffle and team awards as well as awards to the top 5 people who raise the most money.

Bring your family and friends to laugh, have fun and raise funds to help in our fight against EB. The money you raise will help alleviate the financial burden of EB to numerous EB families. You can make a difference!

Each person is responsible for raising $250 for the Noelle Hermes Foundation. Anyone 18 and under or college students are responsible for raising $150. We have forms and letters to help you raise the money. Last year we had several people who raised over $1000, the highest person raised $4700!

View the flyer: Page 1, Page 2

Visit the Noelle Hermes Foundation website for Registration Forms, Fundraising Letters, Sample Call Letter and Sponsor Form.

Change - 2/9 - Ok I apologize if I confuse people but I changed the How You Can Help page to the EB Charities page and have updated the menu at the top of this page with new links. You may also notice that some pages now have a link in the upper left hand corner that says Menu. Clicking that will make the site navigation menu appear on the page so you can more easily navigate through my site. Let me know if you have any problems with it. It will eventually be on every page.

Updated - 2/8 - The How You Can Help page has been updated and redesigned so please take a peek!

New - 2/4 - You can now subscribe to my News and Updates feed! Just hover over the Subscribe button for more choices.

Updated - 2/4 - The message board has been updated with new features and boards so Check it out! If anyone is interested in being a moderator for any of the boards please let me know, thanks!

New - 2/4 - EB often feels lonely and overwhelming and having support from people who understand can make all the difference. So I've made a new page that lists all known EB national and international support groups, contact information, websites, e-mail support groups and message boards. Please let me know if you'd like me to add anything. Click HERE to visit the new Support page.

New - 1/29 - Beautiful new EB awareness graphics have been donated by Louise's Lodge! You can view them by visiting the EB Adoptions page, if you decide to use any of your web page please link them back to www.ebpatient.com and don't forget to visit Louise's website to see her amazing graphics!

New - 1/29 - EB Expressions is a special place where those with EB, or their family members, friends, patients or anyone inspired by EB in some way can express themselves in a variety of unique ways. Whether it be through art, writing, music, photography, video or more, this is the place to share your creative EB Expressions! Come view the wonderful submissions and submit some art of your own!

New - 1/8 - Happy New Year All! Check out this EB Awareness Slideshow created by Silvia.

Research Update - 12/21 - Gene therapy research yield results in a patient with JEB. An Italian research team has treated a 36-year-old man with Junctional EB with skin grafts that contained corrected copies of the laminin-5 gene... Please visit the DebRA website to read more.

Announcement - 12/21 - IT'S OFFICIAL! On December 9, 2006 The House passed H. Res 335 to declare the last week in October as “National Epidermolysis Bullosa Awareness Week”. Now both the Senate and House have passed resolutions for the national week. Our thanks to Rep. Tim Bishop, Rep. Peter King and Senators Schumer and Clinton for their support in making this a reality. This represents an important step on the road to greater support in Washington for EB research. And most of all we thank all the families who wrote letters, made phone calls and sent emails to support this effort.

Announcement - 12/3 - NAHJ Member Brenda Duran Honored For Her North County Times Story On "The Butterfly Girl" The California Chicano News Media Association's San Diego chapter has given its La Pluma Award for Best Feature to North County Times (a Parity Project Partner) reporter Brenda Duran for her two-part story on a Latina who is battling a rare disease by educating others...
Articles:
Cristina, "The Butterfly Girl"
Cindi Hofer, Cristina's mother

Help Needed - 12/3 - Shardai is an 8th grader who was born with EB and Polymosytis, a muscle deterioration disorder, her community is nominating her family for Extreme Makeover Home Edition, Click HERE to learn more about Shardai and how you can help by sending in e-mails to EMHE.

Announcement - 12/1 - A swedish singer named Camilla has written an absolutely beautiful song called Better Place in memory of Tille, a baby who passed away from EB. To hear the song please click HERE. Her CD will be available soon!

Sad News - 11/27 - It brings me great sadness to say that Kate Daley, Kelly's twin sister has also passed away on Thanksgiving day. Our thoughts and prayers are with their family during this very difficult time.

Announcement - 11/19 - The Boy Whose Skin Fell Off will soon be available on DVD here in the U.S.! The DebRA of America site has a waiting list, click HERE to add your name!

Announcement - 11/16 - Jennifer Aniston and David Arquette EB Benefit! Click to read about and see photos of the event at the InStyle website. Also just wanted to say I will be having an esophageal dilitation on the day before Thanksgiving, which is a big bummer but we are celebrating early this year since I will still be recovering on Thanksgiving. Thanks to everyone for your support, I hope you have a very Happy Thanksgiving, there is so much to be thankful for this year, Hugs to all.

Announcement - 10/8 - EB Through the Eyes of a Patient now has it's own domain name! The new site address is www.ebpatient.com. The old address www.ebinfo.homestead.com does and will still work so you can choose to use either one.

News and Updates








This page was last updated: 1/13/2015
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Epidermolysis Bullosa Through the Eyes of a Patient was created 09/06/2003
© Copyright 2003-2007 EBPatient.com All Rights Reserved
Hello and Welcome!
Epidermolysis Bullosa is a severe genetic skin disorder that effects about 12,000 Americans, most of whom are children.
EB skin is as fragile as a butterfly's wings, so we are known as the BUTTERFLY CHILDREN.
If you have never heard of EB I urge you to take a moment of your time to learn about it and help spread awareness of this disorder.
I dedicate this site to all the EB survivors of the world and EB angels watching over us.
I hope you enjoy my site and find it helpful.

About Me: My name is Cristina and I'm 23 years old. I was born with Recessive Dystrophic Epidermolysis Bullosa (RDEB) which is one of the most severe forms of EB. I've created this site to share useful information for those living with EB and inform and educate those who have never heard of this skin disorder in hopes to spread awareness.
Thank you for visiting my site!

Announcement
EB Through the Eyes of a Patient now has it's own domain name! Please update your links and bookmarks to www.ebpatient.com. Thank you!
Subscribe to EB en espanol
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FEATURED EB SITE
More Featured EB Sites
d3o SPECIALLY ENGINEERED MATERIAL
made with intelligent molecules. They flow with you
as you move but on shock lock together to absorb the
impact energy.
Trihariyanto, or Hari as we know him now, has come
up with a really fun way to protect kids who have mild
eb (Epidermolysis bullosa). The idea is that these bright
& colourful pads could be used on top of the bandages
that have to be worn by the kids to protect their joints,
or if they were soft inside could even be worn without
bandages... learn more
PARAFRICTA™ FABRIC
is a new type of fabric that is very low friction to the skin, similar to silk but able to be washed at high temps.
Products not yet available in U.S. or Canada
'Butterfly girl' saved by pillow
'Butterfly' girl in fabric trial
Butterfly girl's anguish eased
Visit the Parafricta website
"WALK A MILE IN MY SHOES" RELAY-RALLY FOR NATIONAL EB AWARENESS WEEK 2007

An amazing event is in the works for this year's EB Awareness Week!

Further details are coming soon!!!
EB AWARENESS WEEK NOW OFFICIAL!!!
IT'S OFFICIAL! On December 9, 2006 The House passed H. Res 335 to declare the last week in October as “National Epidermolysis Bullosa Awareness Week”. Now both the Senate and House have passed resolutions for the national week.
Our thanks to Rep. Tim Bishop, Rep. Peter King and Senators Schumer and Clinton for their support in making this a reality. This represents an important step on the road to greater support in Washington for EB research.
And most of all we thank all the families who wrote letters, made phone calls and sent emails to support this effort.
Click to enlarge