Copy of Antonietta's Story
Antonietta Chiocchi from Wallkill, NY shares her scleroderma story and proves how a strong support system and being your own advocate are important in getting answers for your health.
My journey began in the winter of
2004. I was a single 41 year old mom with three children, working full- time as
an IT Specialist at the United States Military Academy, West Point and planning
my daughter Patricia’s wedding. I
thought working all day and running a
I would go into work and it felt like I was going to pass out and wonder how I was going to make it through the day, my coworker and friend Kerry would notice the pale look of my skin and would end up taking me to the hospital. Once there with just about every member of my family (I’m from an Italian family – it’s like “My Greek Wedding” everyone shows up!). They would run the normal test in the ER and tell me I was anemic and I needed blood but they could not figure out or tell me why since most of the other tests would come back normal. Later on, I started having issues with my stomach. It felt like someone was stabbing me all the time, drinking water and swallowing became difficult as well.
In November of 2005, I developed a rash around my right eye and cheeks, so decided I should go see my primary doctor. He prescribed a topical cream and if that didn’t work he would refer me to a dermatologist. With no result, I went to my appointment with the dermatologist Dr. Greenblatt. As he was examining me, he asked me about my sausage like fingers and the hardening and discoloration of some areas of my skin that he noticed. I explained to him this had been going on for some time and had no answers for what was happening to me. He asked me if I had any other symptoms. I explained that I had been anemic was having trouble breathing, swallowing and issues with my stomach. He took a biopsy of my skin and after a week of waiting the result was as he had expected; I had scleroderma. He went on to explain to me what it was, and that I needed to see a rheumatologist for the best help. I left his office and headed straight to see my parents to tell them. I couldn’t tell whether the look on my mother’s face was one of relief or fear as she started to cry. When I asked her why she was crying she said I just saw a movie with your sister this week called “Hope” with Dana Delaney and the woman died of that very thing. At this point we thought all hope was lost as we had no knowledge of what my future was going to hold.
As each day passed the scleroderma progressed and I was in need of weekly iron transfusions and blood transfusions. This was a difficult task as my skin had started to harden and getting an IV was torture! They decided to put a pic-line in my arm as to make the weekly transfusion more manageable. I became weaker and weaker to the point that those around me thought I was not going to make it to Christmas of 2006, as I had spent a better part of that year in the hospital. I knew there had to be something someone could do. My children and family were devastated, but I had an abundance of support from them and truly some remarkable friends who were by my side.
Then one day while in the hospital, I received a phone call from my daughter Patricia. She told me her mother-in-law had a family friend who had scleroderma and saw a doctor named Dr. David Trentham in Boston at Beth Israel Deaconess Medical Center. He was on a medication and had been in remission for the past 3 years maybe I should try and talk to him. After talking to him, and hearing about the wonderful things this doctor was able to do for him I had hope that this doctor could do the same for me.
In September 2006, my husband, mother and I traveled to Boston for my appointment. He said you have what we call diffuse scleroderma but I think I can help you. I know the smile on my face at that moment could have lit up the room. He proceeded to tell me about the medication and the research he had done along with another doctor. They co-authored a book about how it helped people with Scleroderma called “Scleroderma the Proven Cure.” He then placed me on Minocin 100mg, 2x daily and after the first 6 weeks we noticed my skin starting to soften. I was amazed at the results and so were my family and friends.
My scleroderma came on fast and furious; as one doctor put it, “like a tsunami.” Through it all I had hope and love but most of all, support from those family and friends I love so dearly. I live each day one day at a time even with the daily struggles of it all. I continue to have hope that someday they will find a cure.
I have participated in the annual Scleroderma Tri-State Chapter walk in Poughkeepsie for the past five years and have helped to raise money for research in the hopes that someday a cure can be found and that folks with scleroderma will not be afraid or think it is a death sentence. I am proof of that. Don’t get me wrong I have some bad days but for the most part, my good [days] always keep me going. I now have two married children and one to go; two of the most beautiful grandchildren and continue to work my full-time job as an IT specialist. I will continue to fight this fight and live my favorite Winston Churchill quote; “Never give in. Never, never, never...”!
What is the most difficult part of living with scleroderma for you and your family? Not knowing what kind of day it is going to be for me, I love to travel and be outdoors; spend as much time with my family and now two beautiful grandchildren. I am very independent and don’t like to have people wait on me. So the thought of not being able to do the thing that I love is bothersome to me.
How does scleroderma affect your day to day life? For the most part I manage the scleroderma pretty well, for those days that I can’t I try and get the rest I need at the time and hope the next day will fair me well
What do you wish more people knew about scleroderma? I wish they knew how it really affects individuals physically and their state of mind. That it is not a death sentence it is a new way of life that you have to learn to cope and deal with. I wish that more physicians and health care workers knew of the early signs so that it doesn’t take so long to diagnose and get treatment.
What do you do for fun? Any hobbies you enjoy? I love to travel with my husband and our friends; I enjoy shopping, gardening. The fun times we have with our friends and family.
You are a large supporter of the Stepping out Event in your area- how do you see the event change the community? Over the past 5 years I have seen the walk grown from just a few small teams to so much more, the connections and friendships that have been made are priceless! It shows me that the word is slowly getting out there and more folks are becoming aware of what Scleroderma is.
Any other subjects/topics you’d like to talk about? Other parts of your story that you’d like to tell? I would like to take the opportunity to thank the special people in my life my husband Anthony; children Patricia, Tommaso, Dominick, Jared and Juliana; my parents, family and special friends whom have supported me through this journey; Special thanks to Dr. David Trentham and Dr. Lee Shapiro and Dr. Nicholas Bambino who have taken such great care of me. To my scleroderma family whom I have met through our Stepping out to the cure walks thank you for each year reaching out to the community and raising money for research in hopes that someday a cure can be found! I will always be grateful for you in my life!