Hannah Chambers Bailey writes the FDA

Type of Porphyria: 
Erythropoietic Protoporphyria (EPP)

To whom it may concern,

I am writing to you today, regarding approval of a drug called SCENESSE® (afamelanotide) for the treatment of a condition called Erythropoietic Protoporphria (EPP) or simply Protoporphyria. My name is Hannah Chambers Bailey, and I am a practicing Registered Nurse. I would like to tell you my story and convey issues with which I have struggled, in hopes that you will consider taking the necessary actions to prevent others, both children and adults, from suffering in similar ways.

As a young girl, I was not unlike most other kids; I enjoyed playing outside, I was athletic, adventurous, and relished in all the things that made childhood fun. What my parents and I didn’t know was that all the time I spent outdoors was leading to substantial damage to my body, primarily, my liver and skin. There were numerous trips to the hospital for unexplainable, excruciating abdominal pain, elevated liver enzymes, skin rashes and photosensitivity, as well as an enlarged spleen. These medical issues, while not properly diagnosed, would continue to plague me throughout my adolescence and through the present day.  It was only a few years ago that, after multiple appointments with countless specialists, I was told that I may have a rare disease called EPP.  This diagnosis came in 2012, after I had undergone jaw surgery and was exposed to unfiltered operating lights for an extended period of time. In addition to this exposure, I experienced a substantial amount of blood loss, which served to exacerbate my issues.

Upon careful research and testing, my diagnosis of EPP was confirmed by Dr. Karl E. Anderson, at the University of Texas Medical Branch, one of the foremost Porphyria experts. At this time, all of the issues with which I have dealt began to make sense, as though someone started to put puzzle pieces together. Recently, the damage to my skin and liver, coupled with my ever growing photosensitivity and anemia are making it increasingly more difficult to do the things that make life normal.  I can no longer leave my home to go outside unless I am wearing UV gloves that cover most of my arms, long sleeves, a large UV hat, large sunglasses, etc. This still doesn’t ensure that I will not suffer from the effects of the sun, it merely means the symptoms may be somewhat subdued (and that I will be very sweaty).  Recently, at a work social function, my family and I attended festivities at Six Flags in Atlanta, GA. While the activities started around sunset, I was still forced to wear my UV hat, gloves, long sleeves and leggings to ensure proper coverage. Even with this UV coverage, I still felt the effects of my photosensitivity, though there was only a small window of time when there was any appreciable sunlight.  I am a 42 year old woman, a decorated and accomplished nurse, and I am still being ridiculed at work, by my peers, for wearing UV gear at this function. Recently, at another Six Flags park, a young EPP patient was asked to leave the park or take of her UV gear. This is but one more example that serves to underscore the necessity to take action.

Most recently, my career has begun to suffer; while I am still able to satisfactorily perform all of my duties as a RN, I am finding it more and more difficult to recover from working too many 12 hour shifts in a row under the harsh lighting. I have asked my management to allow me to have a few days break between my shifts (we work 3 12 hour days per week), this request has been met with considerable pushback. I now must wear UV protective gear during my shifts at work, due to the copious amounts of fluorescent lighting used at the hospital.  While the ADA allows for this request to be fulfilled, it seems that my management would rather not deal with making necessary adjustments to accommodate my condition, no matter how small those adjustments may be.