For families living with epidermolysis bullosa, the pains that accompany it far surpass the physical and emotional impact. EB takes a tremendous toll financially on the family, too. This may not be something that others just learning about the disease may realize, so it’s our responsibility as EB advocates out in the community to share the full story.
Economically, EB hits us as families from every possible direction – medical bills, additional caregiver support, daily wound care supplies, the need to purchase special clothing or EB-friendly accessories or toiletries as opposed to what’s sitting on the clearance table at the local department store.
There are many things an EB family cannot do automatically or without careful forethought to ensure the safety and comfort of the person with EB. That inability to simply act on the cheapest alternative can be costly, whether you’re seeking out hard-to-find garments without buttons, elastic and scratchy zippers or trying to find special footwear.
What would you estimate your family pays in wound care materials on a monthly basis? For many of the families I talk to in the community, this figure can range anywhere from $5,000 to $10,000, or greater. Medical bills can drain families of thousands of dollars over the course of several months or a year. The impact that figures like these can take on a family’s budget is something that even those who may not fully comprehend EB could identify with.
Those of us directly faced with EB or even those who know of a neighboring family affected have an opportunity to educate others not only on the physical and emotional scars EB leaves, but the economic devastation the skin disorder inflicts. As you coordinate EB awareness events and fundraisers, find ways that you can convey this message, as well, to those who are first learning about EB.
Consider sharing this kind of information with other families during your educational process. The supporters you are seeking will already understand the costs associated with raising a family, but are more likely to empathize when they see the full impact EB takes on a family’s entire well-being.