First day of EB awareness week 2020

Oct 25th to 31 2020 EB Awareness week!
Today marks the first day of EB Awareness week, this year I’m going to share with you all about what DEBRA Canada dose and each Board of Directors.
DEBRA Canada is a voluntary, registered, non-profit organization dedicated to providing support for families affected by Epidermolysis Bullosa (EB) and to increasing Canadians' awareness of this challenging skin conditions.
DEBRA Canada is the only organizational body in Canada exclusively committed to the care and support of families affected by EB and to improving their quality of life.
To learn more about DEBRA Canada go to this link:
https://debracanada.org/
You all maybe thing why share this type of information with you all, well if it was not for all the lovely people who works on the board of Director then DEBRA Canada would not be where they are right now.
There is 14 Board of Director each person on the board has a big role to play, they all have their own jobs to do, so I'm going to introduce you to the first 2 board member’s.
Tina Boileau ,
Tina is the president of DEBRA Canada; Tina became involved with DEBRA Canada in 2012 you can contact Tina in English or French. Tina is also a parent to a lovely son name Jonathan Pitre who gain his butterfly wings in 2018. To read more about Tina and what she does on the Board of Director go to this links: https://debracanada.donorshops.com/tina
Link to Tina’s EB story: https://debracanada.donorshops.com/eb-stories/tina-boileau
This link you can read about Tina’s son Jonathan : https://debracanada.donorshops.com/eb-stories/jonathan-pitre
The sec Board member I’m going to share with you all is:
Ryan Hultman
Ryan is the vice President, North Vancouver, British Columbia, Ryan became involved with DEBRA Canada in March 2012, Ryan host’s the Annual Bella’s Ball fundraiser on Grouse Mountains Skating pond, this fantastic event raised just over $34,000.00 this year, all this money that is raised goes and help’s out family’s in the EB community. Ryan youngest daughter name Requel has EB also.
To read more about Ryan and what he does on the Board of Director go to this link: https://debracanada.donorshops.com/ryan
Go to this link to read the recap of 2020 Bella Ball fundraiser:
https://debracanada.donorshops.com/.../2020-bellas-ball...
Go to this link and you can read about Ryan’s daughter Requel EB Story: https://debracanada.donorshops.com/eb-stories/raquel
Please feel free to share this with your family and friends and social media!
#EBawareness #debracanada #butterfly

Last day of Epidermolysis Bullosa Awareness Week 2019

As  Epidermolysis Bullosa Awareness Week come to a end today,  we don’t have to stop spreading  awareness about EB, there are still great ways to spreading all thought the year. 

Did you know know that Debra Canada has a online shop and you can buy things to help Support Debra Canada, also when you buy things from their online shop you be helping spreading EB awareness through out the year, and helping a wonderful cause also. You can get a EB pin,  DEBRA Butterfly Pop Socket key chain and many more stuff you can buy also , Hear is the link to Debra Canada online shop: https://debracanada.donorshops.com/products/shop

As you seen this week that Debra Canada dose a lot of the EB Community if it was not for them people with EB would not be able to get the things they need to help us on a day to day base, also they would not be able to go to send EB family’s to a DEBRA Care Conference, or help cover traveling cost to EB clinics, and more. but most of all Debra Canada would not be able to do all the things they do without the help from people donating to this wonderful cause.  

There is still time to donate to my fundraiser page: By donating to my fundraising page your name will be enter in to a draw to have a change to win this beautiful Crocheted kitchen set.

Link to my fundraising page. https://interland3.donorperfect.net/weblink/weblink.aspx?name=E920311QE&id=20&cfifid=54&fbclid=IwAR3lzWMIC6NMLbXFHtRYRiudIqUj4mW-idWOb4DO8Tuli_3ui2fC_u21fxo

Please feel free to share my fundraising page  and my posting with your family and friends on your social media pages or via email.

 :#debracanada  #ebawarenessweek 

Day 6 of Epidermolysis Bullosa Awareness Week 2019

Day 6 of Epidermolysis Bullosa Awareness Week did you know that Debra Canada helps family’s out with travel cost for family’s to go to EB conferences though out the year. Last year they have helped out 13 EB family’s to attend a DEBRA Care Conference in Arizona, USA. Debra Canada would not be able to send those family’s to a DEBRA care Conference if it was for the donation they get form community.

I have set up a fundraising page to help raise money for Debra Canada. Link to my fundraising page. https://interland3.donorperfect.net/weblink/weblink.aspx?name=E920311QE&id=20&cfifid=54&fbclid=IwAR3lzWMIC6NMLbXFHtRYRiudIqUj4mW-idWOb4DO8Tuli_3ui2fC_u21fxo



Please feel free to share my fundraising page and my posting with your family and friends on your social media pages or via email.



:#debracanada #ebawarenessweek

Day 5 of Epidermolysis Bullosa Awareness Week 2019

Day 5 of Epidermolysis Bullosa Awareness Week did you know that Debra Canada has a butterfly ambassador wish program, people that has EB and would like to have there wish granted. When donating to Debra Canada you can be helping Adults/child grant there EB wish.

I have set up a fundraising page to help raise money for Debra Canada. Link to my fundraising page. https://interland3.donorperfect.net/weblink/weblink.aspx?name=E920311QE&id=20&cfifid=54&fbclid=IwAR3lzWMIC6NMLbXFHtRYRiudIqUj4mW-idWOb4DO8Tuli_3ui2fC_u21fxo



Please feel free to share my fundraising page and my posting with your family and friends on your social media pages or via email.



:#debracanada #ebawarenessweek

 

Day 4 of EB awareness week 2019

Day 4 of Epidermolysis Bullosa Awareness Week did you know that DEBRA Canada has a EB hand book for family’s and medical community. The EB handbook can help new family’s and doctors to learn more about EB. You can download a PDF of EB handbook just got to https://www.debracanada.org go to the bottom of page and click on the EB handbook to down load it.

I have set up a fundraising page to help raise money for Debra Canada. Link to my fundraising page. https://interland3.donorperfect.net/weblink/weblink.aspx?name=E920311QE&id=20&cfifid=54&fbclid=IwAR3lzWMIC6NMLbXFHtRYRiudIqUj4mW-idWOb4DO8Tuli_3ui2fC_u21fxo



Please feel free to share my fundraising page and my posting with your family and friends on your social media pages or via email.



:#debracanada #ebawarenessweek 

Day 3 EB awareness week 2019

Day 3 of Epidermolysis Bullosa Awareness Week did you know when any one donated money to Debra Canada they are also helping people and family’s with EB to be able to get things they may need, this is Emily Boros-Rausch, Emily was able to get specialty boots and Moccasins. This is Max and Malia Graf they were able to received a MicroSilk Hydortheraphy Bath tub. By making a donation to Debra Canada those 3 people was able to received help get the stuff they need to help them on a day to day basis.

I have set up a fundraising page to help raise money for Debra Canada. Link to my fundraising page. https://interland3.donorperfect.net/weblink/weblink.aspx?name=E920311QE&id=20&cfifid=54&fbclid=IwAR3lzWMIC6NMLbXFHtRYRiudIqUj4mW-idWOb4DO8Tuli_3ui2fC_u21fxo



Please feel free to share my fundraising page and my posting with your family and friends on your social media pages or via email.



:#debracanada #ebawarenessweek

Day 2 EB awareness week 2019

Day 2 of National Epidermolysis Bullosa Awareness Week, did you know that Debra Canada has a medical assistance fund? They help support with medical needs that are not covered by provincial Health or private insurance in Canada. With the help of people donating to Debra Canada they can help family’s that needs help with medical care. I have set up a fundraising page to help raise money for Debra Canada. Link to my fundraising page. https://interland3.donorperfect.net/weblink/weblink.aspx?name=E920311QE&id=20&cfifid=54&fbclid=IwAR3lzWMIC6NMLbXFHtRYRiudIqUj4mW-idWOb4DO8Tuli_3ui2fC_u21fxo



Please feel free to share my fundraising page and my posting with your family and friends on your social media pages or via email.



:#debracanada #ebawarenessweek

 

First day of EB awareness week 2019

Today marks the first day of National Epidermolysis Bullosa Awareness Week, This week I'm going to share information about EB and about the Organization that helps support people with EB. Debra Canada is the Organization that helps Support family’s with EB in Canada , Debra Canada was founded In 1998 in Ontario, there is 13 board of directors and officers. I will be posting some Debra Canada Highlights this week also. also By donating to Debra Canada you will be helping families with EB. Also once again I have set up a page to help raise money for Debra Canada. Link to my fundraising page. https://interland3.donorperfect.net/weblink/weblink.aspx…

Please feel free to share my fundraising page and my posting with your family and friends on your social media pages or via email.


#debracanada #ebawarenessweek

Rare Condition day 2019

Today is rare disease day: Although I say it should be called rare condition day instead.... As many of you know I was born with EB, but I’m not going to go in to detail about EB. But if you want to learn more about EB feel free to go to this link: https://debracanada.donorshops.com/ or you can go my blog also. https://butterfly-skin.blogspot.com/

If anyone is wondering why I say it should be called rare condition day this is why: Being born with something that makes you look different or walk or talk it does not make you contagious, so for that reason alone is why I say it should be called rare condition day not disease day as EB is not contagious.

Having EB does not make me rare. It makes me who I am. Being me is ok, or being your self is ok also. It does not matter what you have, it matters that you are you.

Yes I have EB I also have some talents. I can cook, crochet, knit, sew. I also help out at kinderschool @ Mark St, and St. B’s and I really enjoy it and love it. I appreciate being able to do all these things.

I myself have the pleasure of getting to learn something new last year. I had never heard about (FPIES) but I was able to meet a wonderful kid and family that have (FPIES) and the mom has a blog about (FPIES) so I encourage everyone to take this time and learn about (FPIES) or something new. Hear is the blog for every one that would like to learn more about (FPIES) https://fpiesworld.wordpress.com/

When you are born with something so unique you are able to help/teach everyone in the medical field and your friends and your family something new every day.

( It is ok to be you, that is who you are) !

Today is the last day of EB awareness week 2018

Today is the last day of EB awareness week; although it is the last day of EB week why stop sharing, educating, and spread awareness, why not spread awareness all thought the year, like Jonathan Pitre. There is many different ways to spread awareness thought out the year you can got to Debra Canada and down load the EB Awareness Ribbon 2018 and share it on social media and to your friends e-mails. http://debracanada.org/understanding-eb/eb-resources.php
Also you can learn more about EB on Debra Canada website. Hey did you know that DEBRA stands for (Dystrophic Epidermolysis Bullosa Research Association ) you can also learn about EB in the news and on social media though out the year.
Did you know I have a blog and you can go to my blog and read what I have shared on Face book thought out the year?
The reason why I decide to start a blog is I don’t feel comfortable standing up in front of people and talking but I wanted to teach and help other people to learn about EB so the best way for me to do it is to share information about EB on social media and start a blog. So feel free to check out my blog and share it. Also today is the last day to go to my online fundraiser and donate by donating to my fundraiser page your name will be put in to a draw to have a chance to win the butterfly blanket I crocheted. https://interland3.donorperfect.net/weblink/weblink.aspx?name=E920311QE&id=13&cfifid=28&fbclid=IwAR1HiJ8_Hggoq1F_zPWtIC6R0ezOkKDZZfE2w17P4YMt7sSZDHN61faWIiA

Please feel free to share this with your family and friends and social media. Thank you to everyone that has shared and donated. #debracanada #ebweek

Day 6 of EB awareness week

Today is day 6 of EB awareness week; I’m going to try to explain why it is hard to find foot wear for people with EB. For most of you, you can just walk in to a store and find foot wear and then walk right back out. Will for people with EB finding foot wear is hard as sometime with EB we get sore/blisters on are feet and have bandages on are feet also. To find shoes to fix are feet is hard. For me when I go looking for foot wear I have to make sure they are wide and are easy to get on and off, and am able to stretch it open to get my foot in when my feet are sore. When trying any new shoes on I know for a fact it will cause my feet to break down for a week or 2 after once my foot is use to my new shoes then I’m find. Also when I switch form shoes to winter boot my feet have to get use to the switching of foot wear. Some time some people with EB cannot wear any shoes they are too painful or too hard to get on and they end up wearing slippers. What I have found that works for me is Crocs slippers, and sandals. This summer I got a pair of sandals form crocs and I have to say I wish I knew about them years ago. This would be the first summer I was able to wear sandals and they did not bug my feet. Also don’t forget to go to my Fundraising page and donate and you will get your name put in to a draw to have a chance to win this crochet butterfly blanket. Please feel free to share this with your family and friends and social media. #debracanada #ebweek

https://interland3.donorperfect.net/weblink/weblink.aspx?name=E920311QE&id=13&cfifid=28&fbclid=IwAR1HiJ8_Hggoq1F_zPWtIC6R0ezOkKDZZfE2w17P4YMt7sSZDHN61faWIiA

Day 5 of EB awareness week 2018

Today is day 5 of EB awareness week; and I have to say Face book can work in many great ways, and you all might be wonder what does this have to do with EB week, well the reason why I’m saying this is, I was able to meet a new family that only lives 2 hours away from me. The mom has EBS and her 3 year old daughter Mia also has EBS. Mia is your average 3 year old that loves to play and just have fun she does not let her EB stop her from doing stuff. This past Sunday Mia and her family were at Chapter’s in their home town and were signing their new children's book they wrote at Chapters on Sunday afternoon. The book titled is call (Mia Thrives), here is the new article to read more about it. https://barrie.ctvnews.ca/mobile/a-children-s-book-educates-public-about-a-rare-genetic-disease-1.4153109?fbclid=IwAR0JFSCHgy8a0ybWFE4NPCXO99Om4Y_71wz2O8XpqWtr_xwpaEZGk7h3L2Q

Also don’t forget to go to my Fundraising page and donate and you will get your name put in to a draw to have a chance to crochet butterfly blanket. Please feel free to share this with your family and friends and social media. #debracanada #ebweek

https://interland3.donorperfect.net/weblink/weblink.aspx?name=E920311QE&id=13&cfifid=28

Day 4 of EB awareness week 2018

Today is day 4 of EB awareness week;today I decide I would share with your all what I give to doctors, nurses or any medical professionals, that may work with me. I have gotten some of this information off websites that other EB members haves used for their used. Then I just added and change some stuff to modify what will work best for me. Also don’t forget to go to my Fundraising page and donate and you will get your name put in to a draw to have a chance to crochet butterfly blanket. Please feel free to share this with your family and friends and social media.
  #debracanada #ebweek
link to fundraising page: https://interland3.donorperfect.net/weblink/weblink.aspx?name=E920311QE&id=13&cfifid=28

Hospital care

Please Read Me!

Hospital care for Patients with Epidermolysis Bullosa

. What is Epidermolysis Bullosa , (EB), it is a genetic condition. My body can't produce the glue/protein I need to make my skin strong like yours. I get blisters easily and my skin can tear easily to. EB is not contagious or a disease.

. First-If you are not familiar with EB; please listen to the Patient, parents or caregiver. They have EB/know EB and usually know what works best for them.

- No tape or adhesives should be applied directly on the skin:

- Tape can Only be used to secure IV lines to gauze wrap or other bandage, but NEVER directly on skin.

- Gauze Rolls, Gauze Squares, IV board are EB friendly options to secure IV tubing.

- Prior to blood draws, IV insertions, and injections, dab with alcohol instead of rubbing.

- When drawing blood or putting an IV in please apply facecloth or a towel under the tourniquet.

- Please do not slide me during bed- transfers, please lift instead. When lifting, lift under knee and under back, or lift with bed sheet.

- When looking in my ears please don’t pull or squeeze.

- If you really need to put heart monitors on me please ask me. And don’t take back off I will take them off myself. Or you can remove the stick part and then put mepilex transfer over the part u need and it should stay on.

 - Lastly, please remember: I have EB and its ok to touch me I'm not contagious my skin is fragile please read this and ask me questions.

Day 3 of EB awareness week 2018

Today is day 3 of EB awareness week. I’m going to try to explain why some people with EB wears Seam free clothing, For some people with EB if their cloths have too much of a seam it can rub on our skin and make sores. Trying to find cloths that are seam free can be difficult to find in stores. There is a company that makes soft, seamless skin wear that works great for people with EB. The company name that make those cloths are called skinnies. Some people with EB wears them under their cloths to keep their bandages in place and to help there cloths they have on that have seams not to rub on their skin as much. What I have found for myself is if I can find cloths that have more spandex in then I have found it is more flexible for me to move and less rubbing on my skin. Yes there are not always seam free but it does not rub as much on my skin as it a little more loose on me.
I’m helping out Debra Canada by doing an online fundraiser has they have a Medical Assistance Fund they help people out with paying for the special cloths they many need. When you donate to my fundraising page you will also be helping out the Medical Assistance Fund. Also by donating you will get your name put in to a draw to have a chance to win the crochet butterfly blanket. Please feel free to share this with your family and friends and social media. #debracanada #ebweek

Link to fundraising page: https://interland3.donorperfect.net/weblink/weblink.aspx?name=E920311QE&id=13&cfifid=28

Day 2 of EB awareness week 2018

Today is day 2 of EB awareness week. I’m going to try to explain why some people with EB wears gloves on their hands. Some time some people with EB will wear gloves to protect their hands form everyday activity; also they wear gloves to help prevent webbing to their finger. Some time with wearing gloves it helps hold hand bandages in place. Not all type of EB has webbing. The main type of EB that has webbing is RDEB. I put gloves when I take my dog Amigo out for a walk so the dog leash dose not rubs on my hands. The first picture you see in my hand in the gloves I wear, and the sec picture Seamfree Gloves from skinnies. Debra Canada has a Medical Assistance Fund they help people out with paying for the special gloves they many need. When you donate to my fundraising page you will also be helping out the Medical Assistance Fund. Also by donating you will get your name put in to a draw to have a chance to win the crochet butterfly blanket. Please feel free to share this with your family and friends and social media. #lovemiasgloves #debracanada #ebweek






link to fundraising page:

https://interland3.donorperfect.net/weblink/weblink.aspx?name=E920311QE&id=13&cfifid=28

first day of EB awareness week 2018

Oct 25th is the first day of National Epidermolysis Bullosa Awareness Week. EB week runs from Oct 25th to the 31st. But why just it only for one week, why not help all thought the year, Like Jonathan Pitre , Jonathan was a young man that had EB and he went out and spread the word about EB. He was, and is, still a great and wonderful role model to everyone that has EB. He never let his EB stop him and he was always positive. As many as you know Jonathan has passed away this year, but although he is gone his positive and outgoing personality will always stay with everyone he has touch and helped. So for this week, and all through the years, let’s help and keep Jonathan Wave going. So please take your time to go to my fundraising page and donate. By donating you will be helping Debra Canada, and people out there like Jonathan and me and everyone else that has EB. Also by donating you will get your name put in to a draw to have a chance to win this one of a kind blanket. Please also share this with your family and friends and social media. #debracanada #ebweek




Picture of the blanket and picture of my and my dog Amigo.






Link to my fundraising page




https://interland3.donorperfect.net/weblink/weblink.aspx?name=E920311QE&id=13&cfifid=28

Rare Condition Day

February, 28 is mark to be rare condition day, most of you already know I was born with EB, but I’m not going to go in to detail about EB. But I will say this: EB can be rare to some doctors and nurses as they might have not heard of it or meant someone with EB before so there for that is why EB is classified being rare.

To me when someone born with a rare condition it does not really mean that person is rare it means they are here to teach other people new things, and they are just unique in their own little ways. Being born with something different should not make that person hold back the dreams they have or they goals also.
Being unique is ok, if we really thinking about it we are all unique in our own little ways. You may not be born with a rare condition but we are all born unique as we do stuff different then everyone else, that what makes everyone special.
Quote from the movie call (wonder)
‘You can’t blend in when you were born to standout.’

EB Awareness week 2017!

Today marks the first day of EB Awareness week! Here is my EB Story:

My name is Sarah and I live in Ontario, Canada and I would like to take this time to share with you my EB story.


I have been living with Junctional Epidermolysis Bullosa (JEB) for 32 years. For many EB families, parents who have a child with EB are not aware of the condition because they had never even heard of EB before. However, for my parents, they already kind of knew what EB was; as I have an older brother living with EB as well. Like most EB parents, my parents were told that their child would not live past the age of one years old. Well of course, I have proven the doctors and other people wrong. I’m still around and living life to the fullest.


I’m going to explain a little bit about what JEB is. JEB is short for Junctional Epidermolysis Bullosa. The type I have does not cause me to have any hand or foot webbing, and I’m able to eat without the help of a feeding tube. I don’t wrap myself in bandages from neck to toe; I only cover my sores/blisters when they need to be covered. I do my own bandage changes. I am able to walk for a short distance and I am not confined to a wheel chair. Thankfully, I do not live in pain 24/7, and I don’t have to take pain killers every day. I do have some scaring, and all I have to say is that if my scars could talk they all could tell you quite the story of how they got there. LOL!


Due to JEB I have lost my hair, finger nails and toe nails. To me, EB is not a disease but rather a skin condition - since it is not contagious. Also, with in my situation, I feel that EB does not have me, I have it. I’m proud of who I am and I would not change anything in this world.

Growing up with EB…


I was brought up to have respect, to know my manners, and to say yes please and no thank you. But growing up with EB came with some challenges; good ones and not so good ones. I had to be careful of what I did so I would not get hurt. I was not able to play sports, do dance classes or gymnastics. However, I was able to find different things to do to keep me busy.


I learned to ride a bike without training wheels. It took me a while to learn how, but I did it. I loved to swing on swing sets. I liked to try to hit a ball with a bat but someone else ran for me, as I was not all ways able to run because it would cause too much blistering on the bottom of my feet. I liked to bounce the baseball around and play the game H-O-R-S-E. I loved to go swimming in our swimming pool we had when I was younger. The pool water helped my skin and it kept my skin from getting too many infections in the summer heat. I also liked playing in our sand box. I learned how to skip rope and do the hula hoop. I also went to regular school. School was ok. There were times when I was made fun of for the way I looked. I had friends and was able to go out for recess with all the other kids.


In high school I went out with some of my friends to the movies, bowling, mini-golf, to the mall, and sometimes we played pool after school. As you can see, I lived a great childhood. I just did things a little different than some other people. But then again, if we all stop and think about it, every one of us does things slightly differently than the next person. There is no two people the same in this world.

Meeting people with EB…


As I was growing up I really did not think there was anyone else other than my brother and myself that had EB. I really did not meet anyone else until I was 17 years old. The first time I heard of anyone else with EB was when my Education Assistant (EA) at school asked me if I had ever meet anyone else with the same skin condition. So, one day my EA told me she was speaking with someone at DEBRA Canada, and she told them that I would like to be a pen-pal with someone else who has EB. I was given the opportunity to connect and start e-mailing this great, wonderful young lady, and ever since that day we have become best friends.


I recall the day my dad took my brother and I up to see my new friend and her family. That was the first time I truly met someone else that had EB. It was a wonderful time. I’m so grateful and blessed that my EA took her time to help me find someone else that had EB. After that I knew there were other people out there. I started to notice I was not the only one with EB. I was able to get on to yahoo groups, My space page, and EB Facebook groups and I was able to see that there was a quite a few people that I could connect with and get to know. I have to say, I really wish my parents knew more about DEBRA Canada and were able to meet other kids/families with EB when I was younger.

Accepting EB…


It has taken me a long time to learn to accept myself and EB. It was hard for me to understand why I could not do everything like everyone else. I used to really dislike myself when I looked in the mirror. I used to wish I was like everyone else.


Then one day, after realizing that there were others out there with EB, a light bulb came on. I realized that feeling sorry for myself will not get me anywhere and once I figured that out, I realized it was ok to have EB and its ok to be different than others. I started looking at the positive side of having EB and my life started to get a lot better. I was able to regain self-confidence.


What I’m doing now…


For the past 15 years I have been volunteering at a daycare in my hometown. I started helping them out when I was in school for my school volunteer placement. I discovered that I really enjoyed volunteering. The kids and staff are wonderful people to work with. I help them out from September-June.


When summer begins, I also volunteer at camp in my home town. I had been helping out at the camp for 11 years now. I really appreciate that they accept me and look past my EB and can see that I’m there to help them out, and not there to look for sympathy or to sit around and do nothing. I know the staff and the kids really appreciate and look forward to seeing me each day.


I do not work but prefer to volunteer because I know I would not be able to handle it all the time. That is why I volunteer. I’m really grateful, blessed and thankful for being able to volunteer in my hometown.

My Hobbies…


I also taught myself how to knit, sew and crochet. I started 11 years ago. For knitting, I use to do it with knitting needles, but it started to cause sores on my hand/fingers from the needles. I was a little disappointed. But I got thinking there must be something out there to help me with my knitting. So, one day I was in Michaels Craft Store and saw a knitting machine. I decided to pick it up and now I’m using the machine to knit. Yes, it is a different way to knit, but hey I’m still able to do it. As an added bonus, using the machine helps to get my projects completed a lot faster.


For sewing, I use a sewing machine, it is faster and easier. I have tried doing it without a sewing machine but the stitches did not look as nice or neat. As well, it caused sores on my hand/finger from the needle. I’m glad someone came up with a sewing machine way back before I was born.


I also taught myself how to crochet. I saw a pattern on the computer and thought I would like to try it out. Well, I picked it right up and it’s like I have been crocheting for years. I learn how to crochet from books and YouTube videos. I have to say, it was really easy for me to learn how to crochet. I’m glad that doing crochet does not cause any sores on my hands or fingers.


I also like to cook and if it was not for learning how to cook in school, I probably would not know how or even like doing it. I love to make chocolate chip cookies, chocolate bumps cookies, apple pie, homemade peanut butter cups and whatever else I can find to cook up. I also enjoy cooking meals from scratch.


I also have grown up with animals all my life. Right now I have a dog and a cat. I also have chickens. My dog and cat are my best friends. My cat’s name is Pumpkin and he loves to get hugs and just sit on me and sleep. I have had Pumpkin for six years now. My dog’s name is Amigo. Amigo has been part of my life for 14 years now. I will have to say he is a one-of-a-kind dog. He knows how to be careful around me. He smells my sores and I know when he does that then I have an infection starting. He loves it when I take him for walks and play games with him. Having animals in my life does not hurt or bother my skin.


As you can see, I try my best to not let my EB get in the way of my day to day activities and the things I like to do. Having EB has taught me to look past at what everyone else has, and look at them the way I would want everyone to look at me. There is a saying I like, “you should not judge a book by the cover” or “you should not judge a person by the way they look”. I have learned how to accept myself for what I have and I feel really blessed and grateful for what I have and for the people in my life. It is ok to be who you are, and it is ok to accept yourself. I have also learned that you can do anything if you put your mind to it.

The reason why I decided to share my EB story…


One day when I was volunteering at work, I had a parent come up to me and ask me if I had EB as the family had learned about the condition on the tv news/ internet and they asked me if there were any stories out there that were positive. They were also curious and asked me how EB effects my life.


They told me that one day their child was learning how to ride their bike, and like most kids learning to ride, their daughter fell off and got hurt. Like most parents, they went over and make sure their child ok. The child said, “I’m ok, I just got boo boo’s like my teacher Sarah, and all I have to do is get back up and try again. My boo boo’s won’t stop me, just like they do not stop Sarah.” When I heard this, I decided to reach out to DEBRA Canada. After a very nice conversation, DEBRA Canada suggested I write something about my EB story. I felt this was important to do because If I could help inspire just one child to think positive and look past the fact that she was hurt; and motivate her to get right back up and to try again…then I think I could write, share and hopefully inspire others with EB to do the same.

Thank you for taking your time to learn more about my EB story.

EB Awareness2016

For this year for EB Awareness week I have decide to create a
Debra Canada fundraising page with a draw/raffle for this beautiful crochet butterfly blanket

(31"x 29")

Which I personally crocheted over the summer months. Please share this with your family and friends. Thank  you, best of luck to every one! 

All you have to do is make a donation to my fundraising page and your name will be entered into the draw for a CHANCE  to win this beautiful butterfly blanket that I handmade. All the money that is raise from this fundraising page will go to Debra Canada Medical Assistance fund. 

Just clink on this link : http://debracanada.donorpages.com/Donation2016/sarah/

and donation and your name will  be entered in to the draw for a CHANCE win this blanket. 

Thank you so much! 

Here is a closer look at the blanket! 

 

 

Part 4 Sense of humor

Part 4 EB Awareness week!

The word (Sense of humor)

We all need a good sense of humor when we have to go thought stuff we really don't want to go though or do.
You may be wondering what would a sense of humor have  to do with EB?  When I have to go to a doctor's appointment or stay in the hospital when I don't feel well (which is not that often), I have found my time goes by faster when I have a sense of humor about being there. I really like it when I have to meet new doctors or nurses or interns. Interns to me is the most fun to deal with, like this one time I got hurt and this intern insisted on working with me . The intern walked in and was like... "what happened to you?"  Now I could have been rude, but I decided to just answer him with a sarcastic sense of humor and said no I just came back form the war LOL. Ya he did not have a sense of humor LOL.
Being in the hospital could be fun or boring but I chose to look at it in a good way. Hey I get to stay in my P.J's all day, stay in bed all day, watch movies and wrap the nurses around my finger till they realize that I can do stuff LOL. The point to this is every one has things thy have to go through. If you try to look at it in a good way and somehow find a sense a of humor for it then it could just go by faster and can be funnier.

Part 3 The Word Different

Part 3 of EB awareness week!

The word (Different)

Being different can be hard or easy. But being different is ok.

For the last few months and weeks I have been reading and seeing a lot of people saying I'm different because I have EB or something else. I use to think the same way I'm different than everyone else. I cannot do that because I'm different.But then one day I was in town and looked around and said to myself hey I'm not the only one out there that is different. I saw other people doing stuff differently than me and they did not care. I then saw people in town not caring if they are different at all.

That got me thinking yes I look different than other people, but are we all not different in some way. There are tall people,big people,same people, some have light skin or dark skin. Some might use a wheel chair to get around. Some might use whatever helps them out.

Then I got thinking being different is ok. I was like you know yes I look different but I could make it sound awful or make it sound cool and neat. Then I got thinking I'm unique. I get to teach people what EB is. I get to show people that just because I look different and do stuff differently than other people I"m still able to do stuff. My point is that it's ok to be different.

Part 2 The word Disease!

Part 2 of EB Awareness week!

The word DISEASE!

I have  been having some mixed feelings about the word disease. I know in the medical books they call EB a genetic disease but to me EB is not a disease it's a skin condition. When I hear the word disease tit offends me big time. EB to me is not a disease it's a skin condition. I have learned that when I say the word disease a lot of people are like EWWW you have a disease get away form me. I don't want to get what you have. Then I'm like EB is not contagious. Then I find it takes me longer to explain what EB is. So when people ask me about my skin I start out saying I was born with a skin condition and it's called EB. Then I explain what EB is. I have found that when I say it's a skin condition a lot of people are more willing to listen and do not get upset and think EB is contagious. I know many people call EB a disease but when I explain/post about it I will not use the word disease. I find it's just plain disrespectful and hurtful to call someone with EB or any skin condition that they have a disease. I know some might disagree with me and some might agree with me. I know everyone looks or views things differently.

Part One About me!

Part One of EB Awareness Week


About Me:

You all know my name is Sarah and that I have EB. What you don't know about me is some talents have and what I do.


Volunteering:

I chose to volunteer at different places in the community. During September to June I volunteer at a wonderful day care. I started volunteering with them when I did a school work placement. When I was done school I decided to come back and help out at the day care. I have been helping them out for over 12 years now. I also volunteer at a camp during the summer time. I have been helping them out for over 9 years now.


Cooking:


Many of my family and friends know I love to cook. I have been told at many family get together that my cooking is really good. I have been enjoying cooking for the past 9 years. Here is some stuff I love to bake. My favorite is chocolate chip cookies. Second most favorite is my home made hash brown potatoes. I also like to try and make new things. The newest thing have made is homemade Alfredo sauce. I made it and my family is like what jar was that one from? I said it is not from a jar I just made it now from scratch and they all went wow that tasted great I love it!






Knitting, crocheting and sewing:





I my spare time I like to knit, crochet or sew. I have been doing those things for the past 9 years. The stuff I make is normally given for baby showers or gifts for people or to fundraisers. For knitting I use a knitting machine. Here are some pictures of the stuff I make.
























You all might be wondering what dose this all have to do with EB awarenness week? I will explain why it does. For the past 2-3 years I have shared information about EB and this year I felt I would just be repeating myself. So I decided I would write something about me. That way you would all know that I don't let my EB stop me from my day to day life. Just because I have EB does not mean I cannot do stuff like anyone else in the world. I might have to do it in a little different or it might take me longer to do stuff but I know I can do it.

2015 EB Awareness week kicks off

As many of you know today marks the first day of EB Awareness Week. As many of you know for the  past 2 3 years I have been posting information about EB, Many of you know I have EB and I don't like EB stop me from my day to day life.

For the people that does not know what EB is hear is a brief information explaining what EB is. EB stand for (Epidermolysis Bullosa) and sometime I can be referred to butterfly skin. So when I was born I was born missing the glue that holds my skin together.

I don't life in 24/7 pain. As you can see I don't call EB a disease, I call it a condition. Many of you know I don't look for People to fell sorry for me or people to think I'm looking for sympathy. I'm just wanting to let everyone know that October 25-31 is EB awareness week and I want to share with you all about my skin. Also let you all know I'm just like you, but my skin is a little bit more sensitive than yours.
#EBweek and #USeb.

Rude,Judging and staring!

Today is the last day of EB awareness week: I have been asked this many times how do you put up with people being rude or judging or staring at you? To be honest it never easy for anyone.

Everyone knows this saying, " You should not judge a book by the cover," or you should not judge a person by the way they look." Some of you reading this might be saying to yourself, what does this have to do with EB. I will try to explain why.

There are people out in this world that has a hard time accepting people for who they are. If you really think about it is not just to do with EB it is to do with anyone the has a disability.

I find that people think that because I look a little different I cannot hear what they saying about me or see the faces they are making at me. I have learnt to just ignore those people, and I have learnt once you accept yourself for who you are life get a little easier. I will say I'm proud of who I'm and if I did not have EB I would not be as strong as I am today. Although we look a little different we all are the same in some ways.

Although today is the last day of EB awareness week you can still learn about EB though out the year. You can check my blog or Debra Canada. Thank you for taking your time to read what I have posted about EB this week.

Eating!

Today is day 6 of EB awareness week: I have been asked what do I eat when I have sores in my mouth/throat and do I have a feeding tube. The answer to the feeding tube is NO!

It all depend on how many sores I have in my mouth. If I have 1 or 2 I just eat what I normally eat. If my mouth is to sore to ear I just eat soft food or I just thinking up my drinks with "Thickening upper".

Some of you might think that if it more thick it would be hard to get down. But the truth is it is easier to get down. Thicker liquids travel more slowly down the throat and that makes it easier to swallow.

Heat

Today is day 5 of EB awareness week: I have been asked if the heat bothers me. Yes sometimes I find the hear will bother me. I like it when I'm in a colder climate. Sometimes the heat could cause more sores. Also, with the air being more dry,it will make me more itchy,and with being more itchy will make me want to scratch more. With scratching more it can cause me more sore/blisters. There for I prefer spring,fall and winter more than summer. I like when it is summer but not when it is to hot for me.  When it is to hot outside I just stay inside where there is air conditioner.

Bath/Dressing Change

Today is day 4 of EB awareness week yesterday I posted about what type of bandages I use. I have been asked how long it takes for me to do a dressing change/bath/shower. It takes me around 45 mins to do bath/dressing change. If you think about it is like doing your hair/makeup after your shower/bath. I rater have a bath over a shower. I love the fell of water on my skin it makes my skin fell better and my sores. I do my own dressing change every day by myself, when I do my own dressing change I fell more independent.

What Bandages I use!

So today is day 3 of EB Awareness week and I have been ask of what type of bandages I use if cannot use any tape/adhesive. So I decide I will take a picture of what I use on a daily base. I don't wrap sores that does not need to be wrap I only wrap them when they are open or draining.

Debra Canada EB balloon pop challenge!

This year Debra Canada decide to do an EB balloon pop challenge. By popping a balloon it represent popping out blisters. If we don't pop our blisters they will keep getting bigger. I find if I pop then when they are small it helps them heal up faster. for me it doses not hurt when I pop them it makes them feel better.

So today is day 2 of EB awareness week and I decide I will take the Debra Canada  challenge and pop a balloon. I would like to nominate my  family and friends and everyone that reads my blog. Make sure you post it on Face Book. and use #EBBalloonpop #DEBEACANADA #EBAwareness as hash tags for social media. Good Luck everyone.

EB Awareness week 2014

Form October 25-31 is EB awareness week. I'm 1 in more than 2000,000 people born with a rare condition. I was born with a rare skin condition called Epidermolysis Bullosa (EB). My skin is also sometimes referred to as Butterfly Skin.

When someone is born with EB it means they are missing the glue that holds their skin together. A way to describe what my skin is like is this: Put two pieces of paper together and if you let them go they will just fall to the ground because there was no glue to hold them together. That is what my skin is like.

Now just think about when you put tape on your skin, You take it off and it dose not hurt. some people with (EB) they cannot use tape. When tape touches our skin or if we bump in to something or fall, it will make a blister.

Just think of when you a thin piece of paper and put it in water and then take it out the paper will just rip, or when you put tape on paper and you take the tape off the paper will come off with the tape. That is what my skin is like when I get tape on me. My skin will come off with tape.

Some of you that are reading this might think would sound painful. I will say yes it is painful when I get some thing on my skin that should not be there. (A.K.A Tape). I don't live in pain 24/7. Sometimes I'm  in pain because my sore that day/week is not liking me. On those days I just push aside the pain and keep on going for the day.

I'm not looking for people to feel sorry for me or for people to think I'm looking for some sympathy. I;m just wanting to let everyone know that October 25-31 is EB awareness week and I wanted to share with you all about my skin. Also to let you all know that I'm  just like you, but my skin is a little bit more sensitive than yours.

Laryngo-oculo-cutaneous Syndrome (JEB)

Laryngo-oculo-cutaneous syndrome (LOC), or Shabbir’s syndrome, presents at birth with blistering and erosions that typically favors the head and neck. Nail dystrophy and granulation tissue commonly are observed, while milia and scarring are less common. LOC is predominantly reported in the state of Punjab, India. Oral erosions, dental enamel problems, dental caries, and ocular (eye) erosions and other complications are common. Laryngeal erosions and related complications are a key feature and may lead to airway obstruction and death. Growth retardation and anemia may occur, but problems with the intestines/gastrointestinal tract or genitourinary tract have not been reported. 

Junctional EB Inversa

JEB Inversa, is a late onset of JEB and Larygo-onycho-cutaneous syndrome are caused by mutations in the laminin-332 gene. It is presents at birth with blisters localized to intertriginous areas such as groin, neck and axillae. although Milia are not common, scarring and nail dystrophy frequently are observed. Oral blister my occur, and dental enamel Hypoplasis and dental caries may be more common. With the exception of  Pyloric atresia, which may occur, other systemic findings such as poor growth, anemia, and blistering and other problems involving the trachea/respiratory tract, genitourinary tract and eyes are not seen.

IT's A new year!

an Irish Blessing

It is a New Year and I'm back blogging again. I hope everyone has a Merry Christmas and a Happy New Year.






This Christmas season my EB has been good. Due to my acid reflex I got giving a elevated bed. With having a elevated bed I'm able to keep my head up more at night and that helps keeps my reflex down






This Christmas was one people will remember. A really bad ice storm hit Ontario which caused hydro outages for millions of people. Some did not get power back on for up to 9 days or more. Many didn't have it back in time for Christmas. My family was lucky was we didn't lose your hydro. The storm passing over us today has reached wind chill temperatures of -40 outside. I cannot remember a winter like this. This is to be expected I guess with Canadian weather.





I'm grateful that even with the weather my family had a great Christmas. Family was still able to visit and celebrate this special time of year with us.






Christmas is also a time of remembrance. It has been 3 years since my grandma went to heaven. When she passed away I read this really nice poem which still today helps me fell like she is hear. As I read it this year I thought of all the people who we have lost with EB in the past year. I have attached it to the end of my blog.






I wish everyone a Happy, Healthy and Safe New year of 2014. Please stay tuned for updates about EB and about myself.






Christmas In Heaven


by Wanda Bencke





I see the countless Christmas trees around the world below With tiny lights,
like Heaven's stars, reflecting on the snow
The sight is so spectacular, please wipe away the tear
For I am spending Christmas with Jesus Christ this year.

I hear the many Christmas songs that people hold so dear

But the sounds of music can't compare with the Christmas choir up here.
I have no words to tell you, the joy their voices bring,

For it is beyond description, to hear the angels sing.

I know how much you miss me, I see the pain inside your heart
But I am not so far away, we really aren't apart.
So be happy for me, dear ones, you know I hold you dear.
And be glad I'm spending Christmas with Jesus Christ this year.
I sent you each a special gift, from my heavenly home above.
I sent you each a memory of my undying love.

After all, love is a gift more precious than pure gold

It was always most important in the stories Jesus told.

Please love and keep each other, as my Father said to do For

I can't count the blessing or love he has for each of you

So have a Merry Christmas and wipe away that tear

Remember, I am spending Christmas with Jesus Christ this year.

Junctional EB with Pyloric Atresia

           Junctional EB- Pyloric Atresia is presents at birth with widespread blisters and erosions.  Although milia are not common, scarring and nail dystrophy.  Oral erosions may occur, and dental enamel hypolasia and dental caries may be more common. The key feature is the presence of pylocic atresia.         

          Pyloric atresia is the presence of a stricture or narrowing in the stomach at the pylorus, a muscle, that prevents stomach contents from passing into the intestines. Affected infants develop abdominal distention, vomiting, dehydration and electrolyte abnormalities within the first few weeks of life, and death is possible if pyloric atresia is not recognized and treated promptly through surgery.  

            You can have an ultrasound or contrast-enhanced X-ray such as an upper gastrointestinal barium study done to see if you have stricture or narrowing.