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The worst disease you've never heard of

Let’s paint a picture for you.

Imagine having a textbook pregnancy with no complications. You drive to the hospital for “go time,” excited, nervous, and anxious to meet this new little girl or boy. Everything goes smoothly and the baby is born crying, the first sign that all is well.

Only this baby is also born without skin on his legs or feet and with tiny blisters around his mouth. None of the medical professionals in the hospital have seen something like this before. No one is sure what to do. One attending physician finally remarks, “That looks like it could be EB.”

Epidermolysis Bullosa (EB) is an extremely rare genetic skin disorder. It’s so rare, none of the staff had ever seen it in person before. It’s most often referred to as “the worst disease you’ve never heard of.”

Take Cole Garland for example. When he was born with EB, his medical team was so unprepared to treat it, they unknowingly caused additional pain when they removed heart rate leads from his chest, pulling his delicate skin off with them. 

Signs were quickly hung on his isolette reading, “NO TAPE.” A lesson learned just a little too late.

But really, it’s not their fault. Nurses and doctors in hospitals across the country can’t be expected to know the best treatment options for a disease that they’ve never seen or heard of before. Perhaps even for a disease that no one has seen or heard of before. 

In the United States, a rare disease is generally considered to be a disease that affects fewer than 200,000 people at any given time, like EB which impacts approximately 25,000 people today. Currently, there are more than 6,800 known rare diseases, affecting an estimated 25 million to 30 million Americans.

That number can be deceiving. Millions of people seems like a lot, a huge group that must be receiving individualized and highly-skilled care. Spoiler alert: they’re not. 

At Chive Charities, we’ve met rare disease individuals who are 1-of-100,000, 1-of-10,000, 1-of-100, and even 1-of-4 known in the world. And while rare disease affects a significant portion of the population, the reality is that for many rare diseases, there may be little or no research in progress and even fewer medical professionals working in the space. 

That’s why rare disease organizations are so critical. More often than not, they’re the liaison between a rare disease patient and their care team, providing invaluable insight into treatment and working to prevent unintentional harm.

DEBRA of America is one of them.

In 1980, DEBRA of America (Dystrophic Epidermolysis Bullosa Research Association) was founded by a mother of a child with EB who faced the same hurdles that Cole’s family would encounter some 25 years later: lack of awareness.

DEBRA provides multiple free services and educational information to help with the physical, emotional, and financial burden this devastating disease causes. They spend a large portion of time educating hospital staff and medical professionals on EB and what to do when they encounter a newborn with it. 

They help eliminate the “never seen or heard of this disease” element.

DEBRA’s work doesn’t just end with doctor and nurse education. They’re also a huge resource for families of children with EB. For those same parents who drive to the hospital expecting a typical birth only to discover their child has EB, that awareness and support is everything.

Think about it - if the doctors and nurses aren’t properly trained on wound care and pain management for EB patients, how are the parents supposed to learn what to do for their kids? Currently, daily wound care, pain management, protective bandaging are the only available options for a patient with EB. The level of care is similar to that given to burn patients. 

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A person with a severe form of EB - like Cole Garland - may be covered up to 75% in specialized bandages and endure dressing changes in excess of three hours each day. That’s in addition to, you know, providing everything else a newborn baby needs. It’s exhausting just reading about it.

Thank goodness for DEBRA. They step in during those first few anxious days in the hospital with their New Family Advocate Program, providing a care package of EB-friendly specialized bandages and life-enhancing gifts to improve the child’s circumstances.

The program also helps them assist parents in the transition from hospital to home as they learn more about the intense and total patient care required for their baby.

And this is where DEBRA realized they could use some help from Chive Charities. The cost of the specialized bandages alone is staggering. Cole’s family stated they spend roughly $3,000-$4,000 each month on wound care supplies. And while DEBRA is working to educate insurance companies on why these bandages should be covered, they’re not quite there yet. 

They asked our community of supporters to help purchase some of the quality of life enhancements included in the newborn care packages, specifically specialty clothing and diapers that can help protect a child with EB’s skin.

The ask was for $10,000 to purchase three different items for each of the care packages. Thanks to donors like you, we cut them a check for that exact amount. How incredible is that?

Coincidentally, both Cole Garland and DEBRA came to Chive Charities around the same time, unbeknownst to them. Is it a coincidence that “the worst disease you’ve never heard of” was just shared with millions of people in Chive Nation? We think not. Your collective support has changed hundreds of lives already. Why should this be any different?

We talk a lot about making the world 10% happier. And when you think of EB patients like Cole who deal with debilitating pain and near-constant wound care, that 10% is a big deal. For DEBRA, that 10% lies in a care package for a family knocked off their feet. For Chive Charities, that 10% has been the difference-maker in changing the lives of more than 430 rare medical, veteran, and first responder recipients. 

When you think of it that way, there’s no limit on what your 10% could do. Become a monthly donor today and let us show you. DONATE HERE

P.S. You can learn more about DEBRA and its programs HERE.

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