#ebawareness

蝶の戦士

Damian Lewis Fans! Wanna HELP the bravest girl Damian has ever known? Then please POP the balloons for Sohana and all butterfly kids out there & RAISE awareness for EB! Please READ and SHARE. Thank you

WIP-Butterfly Series🦋蝶の戦士

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Art for EB Awareness and Izoi design. Today I'll be streaming art and designing a butterfly room for Inzoi, dedicating the room to the little ones fighting EB. #EBawareness #butterflychildren #art #tiktoklive #tiktok #livestream

TGIF. I have been streaming like a maniac and I’m gonna do it again. Two goals: 1) raising awareness for Epidermolysis Bullosa ( EB, butterfly skin) as well as the organization Debra for here and the UK. Please Donate to Debra.org or Debra.org.uk, write the message “The Empress sent me” in the comment area and screenshot it. More soon!


2) raising 1500USD for my grandparents to finally see Andrea Bocelli live in my home state. Cashapp-$Kiki3018 or Streamlabs.com/ki_empress/tip

Mayo Clinic-Epidermolysis bullosa (ep-ih-dur-MOL-uh-sis buhl-LOE-sah) is a rare condition that causes fragile, blistering skin. The blisters may appear in response to minor injury, even from heat, rubbing or scratching. In severe cases, the blisters may occur inside the body, such as the lining of the mouth or stomach.

The main types of epidermolysis bullosa are:

Epidermolysis bullosa simplex. This is the most common type. It's brought on by heat and friction and develops in the outer layer of skin. It mainly affects the palms and feet. The blisters heal without scarring.

Junctional epidermolysis bullosa. This type may be severe, with blisters beginning in infancy. A baby with this condition may develop a hoarse-sounding cry from continual blistering and scarring of the vocal cords.

Dystrophic epidermolysis bullosa. This type is related to a flaw in the gene that helps produce a protein that glues the skin layers together. If this protein is missing or doesn't function, the layers of the skin won't join properly. It can cause skin that looks thin. Diseased mucous membranes can cause constipation and make it hard to eat.

Kindler syndrome. This type tends to cause blisters in multiple layers and so can look very different from person to person. The blisters tend to show up in infancy or early childhood. It increases sun sensitivity and causes skin to look thin, mottled and wrinkly.

Each month, debra of America’s “Ask the Nurse” series will highlight a commonly asked question received by our Nurse Educator, Emily Griffith, BSN, RN. This month’s post focuses on Vaccines. Let’s get started!

Question: Is it safe to receive vaccines in EB and are there any precautions we should take?  

Answer: Vaccinations during childhood and adulthood provide important defense against serious illnesses.  Vaccines allow our body’s immune system to safely develop antibodies/immunity to diseases and reduce risk of these illnesses.  Routine vaccinations in EB may be given at the appropriate, scheduled times as directed by your physician. You or your child may experience a mild reaction to some vaccinations, which includes a slight fever (under 102 degrees F), soreness and/or redness at the injection site. These symptoms can typically last up to 1 to 2 days and should be discussed with your healthcare provider. When receiving a vaccine injection, remind your healthcare worker to gently dab the area with alcohol to avoid any friction from cleansing the site. The injection should be placed at the appropriate site where there is intact skin. Following the injection there should be no vigorous rubbing or massaging, just gentle pressure with an EB-safe dressing to cover the site.  

For more information regarding vaccines, please discuss with your healthcare provider. You can also refer to the CDC for more info on “Understanding How Vaccines Work” here.

Click here to watch Dr. Amy Paller’s video presentation on COVID-19 & EB on EBconnect.org.

To read more commonly asked questions, click here.

If you have an EB care-related question for our EB Nurse Educator, please email: [email protected] or call toll-free at 866-DEBRA-76 (866-332-7276).