I was recently asked the following question by a reporter:
“What do you want others to know about genetic disorders and the challenges individuals who have them and their families face?”
So I wanted to share my answer here:
I think the foremost thing I would like people to know about EB in general is that this condition exists and it’s horrible. There is no sugar-coating EB or trying to make it worse than it is, we couldn’t imagine a worse condition, ever. The pain the patients go through, especially in the worse forms, is unimaginable. Awareness is key. Without awareness we have nothing. Without awareness we can’t hope to raise funds to find a cure.
Then I would love for others to accept us and just love us. So many families feel abandoned by family, friends and shunned by acquaintances. They don’t know what to do or say, so they avoid. All they need is to be there with a hand to hold and a heart to understand. We want to be able to talk to others about what we go through, not for any other reason but to feel as if we’re not alone, to know that there are people out there that care.
Challenges on our end consist of getting the supplies we need, getting Insurance companies to cover what we need, being able to see Doctors knowledgeable about the condition and in general not having to jump through major hoops just to being able to care for our children. It’s so hard to find programs to help us, and with rare diseases many times the programs do not know where to “fit us” because our needs are so unique. We just want to be able to have someone care enough to address our individual needs and not being told nobody can help us because they know nothing about the condition.
Education is truly key.
Love & Light,