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.’