We may have different expectations for our children. Not all of us want them to be rich and famous, and yet, all of us wish them to be safe and sound! However, when a child is born with EB, sometimes even doctors panic at the sight of such abnormal skin condition. You probably have been searching for help everywhere, and still all you found is that there’s still no promising future for the health of your child anywhere.

 

When you key in “Hereditary Epidermolysis Bullosa,” a jargon too hard to memorize by heart, you almost fainted by what you saw. “Is my child going to be like this—covered in blisters, forever?” You found that some kids slowly grow out of it, while others were in worse conditions you couldn’t bear to have a second look. “Where does the future lie for my child?” Wiping out tears, you started learning all the wound dressing skills, and all the tedious details on food, clothing, housing and transportation in a fluster. “How should blisters be handled?” “How to dress the wounds?” It’s easy to talk on paper; however, it takes countless crying, endurance, and practice to be skilled at these things. Day by day, anxiety and remorse constantly stand alongside the joy of having a newborn life as all the trouble from choosing the right clothing materials to the right choices of food fills your mind.   

 

 “Why did this happen to my child?”  “What did I do wrong during pregnancy?” “What caused the mutation?” “Maybe there’s something else…” Earlier in your life, you had never believed in spirits, demons, and karma, and now, even these crept into your mind! Listen! We want you to know: “Your child is your painstaking masterpiece, and a gift from heaven!” We are not being optimistic. This is the hope.

 

Medical science has been making a lot of progress. Waiting for the solution of repairing abnormal genes may be a long journey, but we will get there one day. Meanwhile, our team will walk the walk with you and your child in the journey ahead. In “The Team for EB and Rare Skin Diseases of NCKU,” we promise to provide an all-round health care when the perfect medical solution is still on its way. Besides taking care of your body and mind, we will also share the pain, the tears and joy that life brings along the way.

 

 The path of a doctor seeks humanized wisdom, instead of pure skills.
We believe “love is what medical science is all about.”

－Philippus Paracelsus（1493-1541）

 

Therefore, please don’t be afraid to seek medical help.

With wounds, life can still bloom.