EB Hacks

07 May, 2023
We used knee pads to protect the skin on my knees. I started wearing them when I was around six months old and learning to crawl, and I continued to wear them growing up in school.
27 Jul, 2022
we have tried to include lots of options to suit different forms of EB! Thank you to all the community members who shared their experiences to make this possible.
24 Jun, 2022
The first time I took a flight with my son Milo he was 3 months old and I had a doctor’s appointment out of province.
03 Feb, 2022
I have been settling into life as a new mom and am excited to bring some new hacks from my experience being a mom with DDEB. I am figuring things out as I go along sharing what has worked for me and other tips and tricks from the EB community.
21 Oct, 2021
Rachel has RDEB that has caused her fingers to fuse together but that hasn’t stopped her from doing many things including cooking. She is currently in culinary school and through trial and error has found methods of cutting that work for her.
21 May, 2021
The MiaThrives Team is looking forward to sharing another Free downloadable PDF Resource for the EB Community. The Hospital Card is a smart PDF that can be edited to your individual needs and printed and cut down into 4 cards per sheet.
14 May, 2021
MiaThrives is excited to share another free downloadable PDF Resource for Women with EB. This Birth Plan Template, or as we like to call it Birth Preferences Template can be edited to your individual needs and desires.
09 Apr, 2021
We are very excited to be launching the first of many free downloadable PDF resources for the EB community. The first is an EB-friendly Hospital Checklist. Navigating pregnancy with EB has had its challenges, such as struggling to find resources and information.
19 Mar, 2021
I am 30 weeks pregnant and starting to prepare some items for my little one. Since I have DDEB there is a 50% chance the baby will also have EB.
12 Mar, 2021
Today I am going to discuss options for reducing scars and stretchmarks. Living with EB it’s impossible to completely avoid scars, however, there are steps that can reduce the redness and visibility.
05 Mar, 2021
I am 28 weeks pregnant and starting to prepare some EB Hacks for the baby if they have EB. With DDEB the child has a 50% chance of being born with EB.
26 Feb, 2021
I am a bath lover and it is a crucial step in taking care of my EB skin. When I first found out I was pregnant I did some research on safe bath practices while pregnant.
12 Feb, 2021
I am 25 weeks pregnant and today I am going to chat about maternity clothing. In general, I have a difficult time finding pants that don’t irritate the skin on my lower back. Due to Covid, it is more challenging to get into stores to try on clothing.
05 Feb, 2021
You may know Julia from her Instagram account @yogijewels. She wanted to focus on yoga and stretches with ease and lots of relaxation.
22 Jan, 2021
After a little break, I am excited to be back with weekly EB Hack videos offering tips and tricks to living your life to the fullest with Epidermolysis Bullosa. Today’s hack will take you step by step through making an easy four-ingredient Bath bomb.
19 Jan, 2021
I am 22 weeks pregnant and excited to start sharing some hacks about pregnancy and newborns. The first video of the series is sharing some information I gathered about genetic testing options.
22 May, 2020
The Face Halo is a non-toxic and reusable make-up remover pad. It uses tec fibers and just uses water. It lasts for about 500 uses before it’s time to switch to a new pad. You can find them here on their official website.
24 Apr, 2020
Today I am going to talk about a hack that I first heard about from my friend Deanna. Deanna was one of the Kaleidoscope artists (click here to view her story.) She has RDEB and used this hack to heal a chronic wound.
15 Apr, 2020
Since the start of the Coranaviruis stores have been quickly selling out of hand sanitizer, even online stores such as amazon. Occasionally when you can find it the prices are raised because of the demand.
03 Apr, 2020
We would love to hear from you if this is something you’ve tried and it works for you! Also, feel free to let us know if you have any other EB Hacks!
19 Mar, 2020
oday I am going to talk about a few things I am trying to do from home to boost my Immune System and protect myself agents Covid_19. Other than trying to get extra asleep and eating especially healthy.
11 Mar, 2020
Today I am going to talk about one of the only bras that have ever worked well for my skin! Bras can be a tricky thing to shop for when you’re living with EB. Lots of extra aspects to keep in mind to find a product that doesn’t cause friction and blistering.
06 Mar, 2020
I have been working for MiaThrives for almost one year now as there Creative Director. I also work on social media, and one of my favorite aspects of the job is getting to connect with the community online. One of the biggest perks for me living with EB and working for MiaThrives is having such an understanding Team.
27 Feb, 2020
Today I’m going to talk about a product a friend recently recommended to me and I have been loving. It is a roll-on balm that is infused with CBD from a company called Delush. Delush is a Canadian Vancouver based Company that handmakes all their products.
19 Feb, 2020
Mia and Melissa race to see who can take care of their dolls’ “boo-boos” faster. Both Melissa and Mia often need to take care of sores from day to day life with EB. Together, they use band-aids and sometimes various creams and bandages. This game helps normalize bandage changes and teaches the importance of taking good care of wounds.
05 Feb, 2020
During the EB World Congress 2020 in London, we had the amazing opportunity to connect with members of the EB community including Toni and her mother. Toni has Junctional EB and helps support other families. They are in the process of starting the first Debra South Africa.
29 Jan, 2020
Emily and I have had the amazing opportunity to attend the first-ever EB World Congress in London England. We have learned a lot about new research and technology being done to help make life more comfortable for those living with EB. It has also been wonderful to connect with the EB community and to be able to share a few EB Hacks.
22 Jan, 2020
Melissa (founder of MiaThrives) and I are both in London for the EB Wolrd Congress 2020. Today I am going to talk about an easy hotel hack that you can do from anywhere in the world!
15 Jan, 2020
The skin on my feet has always been a challenging area for me. This is a common issue for those living with EB. Having the right pair of socks can help prevent friction and overheating, therefore preventing blistering.
13 Jan, 2020
A few years ago my partner and I lived in Goa, India working for another non-profit organization. During our time there I learned a few new EB Hacks. One of those Hacks is the wonderful natural healing properties of turmeric! Turmeric has many uses and can be applied directly to the skin mixed with creams.
03 Jan, 2020
Today I’m going to talk about Aquaphor, a product I started using fairly recently. I got it through Debra Canada they sent out some EB care packages. This was one of the products and I absolutely love it.
18 Dec, 2019
Today I’m going to talk about Niltac spray, a product that the Vassallo Idiens family uses, and I use it as well! It is a spray that removes medical adhesives without stinging. You can find it here on amazon.
13 Dec, 2019
At a recent dentist appointment, this hack was recommended to me to help prevent gum disease. People living with EB have a slightly higher risk of developing gum disease because of the constant sores in our mouths.
15 Nov, 2019
My partner and I recently bought our first home and are so excited for this new adventure. A few new challenges have come up as we are doing some home improvements. There has been trial and error for the tasks and tools I can and can’t do or can figure out another way of doing them.
07 Nov, 2019
We like to start Mia’s day with a swim in a saltwater hot tub. Some days we skip the swim and add Sea Salt to Mia bathwater. You can purchase Sea Salt at your pharmacy or on Amazon, click here for a link. 1\4 cup is more than enough and you can then add any essential oil of your choice.
23 Oct, 2019
Angie is Melissa’s Mother the founder of MiaThrives and Mia’s grandmother! This is a Hack she has now used for two generations.
17 Oct, 2019
Ed’s father would take sheepskin and cut it to size and hot glue it into his sports equipment. From padding to skates this helped prevent friction and injury. You can purchase large pieces from Ikea, click here for the link.
03 Oct, 2019
Tessa was born with Simplex EB as well as her Father and Brother. She is an artist and was featured at the Kaleidosopce Gala in October 2019. You can watch the full video here (or down below.
20 Sep, 2019
Deanna is an artist with RDEB and you can click here to see her Kaleidoscope video. She had tried many products over the counter from various stores and even if they weren’t alcohol-based caused irritation.
15 Aug, 2019
I am in Germany for my cousin’s wedding and have run out of bandages. I didn’t pack enough Meplex Bandages, I brought the amount I typically use at home but forgot to take into account often having more wounds and blisters while on the road! You can watch the full video here or down below.
17 Jul, 2019
Today I’m going to talk about a really awesome body-positive intimates company called Knix. All their products are designed to make you feel comfortable in your own skin. For all body types in a wide variety of styles, sizes, and fits.
03 Jul, 2019
With summer coming up I have noticed lots of chat on the EB groups about footwear. With warm weather comes additional moisture and friction that can cause more blistering. Having the right pair of shoes can make all the difference!
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