The Fresh Faces Project Stands With ECD Survivors: These Are Their Stories

Interview with Dawn Smith

By Calynn M. Lawrence
December 2017

I was born and raised in Chicago by a loving mother who not only taught me how to be the best mom I could be, but also gave me the tools and strength needed to deal with all that Erdheim-Chester Disease (ECD) dishes out.  I have been married to my husband Tory for over 21 years and I have three beautiful daughters: Candyss, Calynn, and Camrynn.  I enjoy trying to figure puzzles and people out, which is why I love studying human behavior which has led to both my Bachelor and Master degrees in Psychology. Currently I am pursuing a Doctorate in Forensic Psychology.

Describe how you came to find out you had ECD:

I was diagnosed with ECD in September of 2014 after going through six months of doctors’ visits, in which I saw a total of 25 doctors. My first symptoms were masses that grew on my lower back, a mass on my colon, and my eyes turned bright red like a Halloween costume and stayed that way for weeks.  After two outpatient surgeries on the masses on my back and on my eyes the tissue was sent to the Cleveland Hospital and a diagnosis was given to me from a piece of paper slid across the desk by my surgeon with his only comment being “You are a very rare lady.” I was diagnosed just in time to have a major surgery on my colon which is where my ECD has taken up residency.  The first report I received was that I had 2-5 years to live. I immediately called my sister Leretha and she came to my rescue. There have been many strong supporters in my corner, but Leretha along with my daughters have been my saving grace through the whole process.

Describe some of your symptoms/struggles with ECD:

Besides the issues listed above I have constant pain throughout my body that began as an easy 9 on the 1-10 pain scale. However, because I have become desensitized to it after three years it’s now about a 6 on a good day.  I have balance issues that have caused me to fall for no apparent reason.  This happened once and I landed in freshly poured cement! I was so embarrassed that I hopped up and ran across the street to a nearby restaurant where a wonderful clerk gave me paper towels to wipe the wet and heavy cement off of my favorite boots.

Describe the treatments/procedures you have undergone with ECD:

I have had seven surgeries, three colonoscopies, 5 MRIs, 5 Pet Scans, 9 CT cans, and countless amounts of blood workups. I’ve been on a variety of medications such as Anakinra, steroid infusions and pills, methotrexate injections and pills, hydrocodone, Tramadol, Xanax, prednisolone eye drops, Erythromycin eye drops and creams, insulin, and the list goes on. However, I have an amazing team of ten doctors headed by the most brilliant and compassionate man I know, Dr. Eli Diamond of Memorial Sloan Kettering Cancer Center, and the most knowledgeable yet down to earth and caring sista girl I know, Dr. Ivey-Brown of Christ Advocate Hospital in Illinois.

Describe the effect living with ECD has had on your life:

ECD is a sneaky, relentless, and money grabbing disease. Sneaky because you never know where in your body it will attack next. Relentless because once you tackle it in one area it comes harder in another. Money grabbing because it is so rare with less than 500 people living with the disease most of the treatments aren’t inherently covered by insurance. You and your doctor (if you have a good one) will have to fight to get treatments covered.  Even then, with travel to see a specialist and the off-label medicines you might spend your whole life savings to continue to have a good quality of life or possibly even to save your life. I was going through life having a good time and BAM!!!! out of nowhere ECD came and said “Nope, not happening you belong to me now!” This led me to take a Family and Medical Leave (FMLA) leave from my job as a Manager/Assistant Director at the Pacific Garden Mission and eventually resigning my position. But just in time, Jesus stepped in and said “You are my child I will not leave or forsake you!!!” and I knew life would be okay: different but okay.

What does having ECD motivate you to do in life?

Live each day to the fullest and spend time with my family making memories that will live on forever. I have also become more conscious of others and their struggles and when I can help someone in need I do, no matter the cost.  One of my biggest pet peeves is when someone tells me I don’t look or act sick, when in fact I am sick and struggle every day to get out of bed and live life.  When you are told that you only have a certain amount of time left you can either just give up or choose to fight the good fight. I told you my mother, Jeanette, didn’t raise no punks so I’m in for the long haul.

What do you want the world to know about ECD?

It is an extremely rare disease that affects each person differently, but is a rare type of slow-growing blood cancer called a histiocytic neoplasm, which results in the overproduction of cells called histiocytes.  It’s a disease that not all doctors know about.  Not because of a lack of skill, but because of lack of knowledge that one the disease exists and how to treat the disease when it is acknowledged. To my knowledge, I am the only African-American diagnosed with the disease which speaks volumes regarding its rarity. We need people to donate time and money to research for finding not only a cure, but to educate doctors, nurses, and other medical professionals in order for them to be knowledgeable in diagnosing and treating individuals with ECD.  We may be small in numbers, but we are big in providing for our families, making a difference in our communities, and making this world the best world possible for our offspring.

Thanks for listening to my story.

Also featured in Calynn’s Blog: fashionthunderclap.blogspot.com