A little known, utterly brutal disease is incredibly close to a cure and you can help speed up the process. Often called the worst disease you’ve never heard of, Epidermolysis Bullosa (EB) is a blanket term for a number of diseases that result in blistered skin. People with EB can tear and blister their skin with the slightest touch. Even eating can result in internal blisters to the mouth, esophagus, or intestines. For those suffering from this disease, every day is filled with bandages being ripped off and replaced, the threat of more injury and infection, and sadly, unrelenting pain.
Thankfully, there is hope. EB Research Partnership and Mack Weldon have teamed up, creating a special edition of Mack Weldon’s wildly popular 1285 sock with 100% of the net profits going to research for the cure.
Here’s a rundown on EB that doesn’t require a medical degree to understand: our largest organ is the skin. It is a protective barrier for our squishy, important inside stuff. For a healthy person, skin can take some serious hits before there’s any significant damage, but those born with the genetic condition EB lack a specific protein that binds all the many layers of skin together, so their skin tears and blisters easily. EB also means skin doesn’t have the ability to heal. With repeated injury, (which for some EB sufferers can result from the room being slightly too hot or a shirt that wasn’t soft enough), toes and fingers can fuse together. Infections can ravage the body through open wounds and blisters. Lifesaving bandages can cost a family up to $14,000 a month. There are four subgroups of EB, which vary based on what protein is lacking and in which skin layer the blister occurs. They vary in severity, but there isn’t a cure for any of them. Yet…
Research for a cure:
Okay, here’s a good news break: there are several treatments that doctors and scientists are researching, many of which are providing a new sensation of hope for EB sufferers. Even as little as five years ago, there were no treatments or cures in sight. Now, clinical trials are using protein replacement therapy (just what it sounds like: introducing or increasing the protein needed) headed up by the University of Southern California (USC). It’s not a cure per se, but it’s a treatment that is providing a remarkable quality of life that people with EB have never previously experienced.
Cell therapy is also proving exciting. Doctors are using stem cells, fibroblasts (cells in connective tissue that make collagen and such), or gene-corrected cells, and injecting them into an EB patient with the idea that it will cause the expression of the needed protein. Doctors at the University of Minnesota used bone marrow transplants with some success and Kings College in the UK also has an on-going and exciting trial using fibroblasts.
The third promising avenue to a cure is gene therapy. Stanford University is all over this one. Essentially, researchers take a small amount of skin from someone with EB, grow it to about the size of a playing card, then, using a virus as the vehicle, doctors inject the needed gene into the skin. Once the treated skin begins to make the protein, that skin is grafted back on to the donor patient and it goes from there.
The helpful socks!
Of course, all of this is wildly expensive and, as it’s not a high-profile disease, EB researchers can use all the help they can get funding the search for a cure, especially when the cure is tantalizingly close. It’s suggested we could have one within ten years!
Mack Weldon, the maker of fantastically comfortable underwear, socks, and shirts, has stepped up, creating three sophisticated, special edition socks with 100% of the net proceeds going directly to EB researchers. The company’s socks are massively popular, with classic patterns and designs, updated with modern colors and technology. After listening to their lawyers (usually a smart move, but rarely is it about fashion), Mack Weldon created the 1285 Performance Dress sock, an antimicrobial, cushioned sock men could wear with their best suits.
Their EB limited edition series of the 1285 Performance Dress sock features a small butterfly, the emblem of EB, since children with EB are often likened to butterflies whose wings are so easily damaged. The socks have three color options, Total Eclipse, a lovely navy color, Charcoal Heather, and Indigo Heather. At $32 a pair, you’re getting stylish, incredibly comfortable feet while simultaneously helping bring comfort to others. It’s one helluva deal.
To learn more about EB and how else you can help, visit the EB Research Partnership website.
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