Living with MDS: Ryan’s Story Part 2

Hello my name is Ryan Szanto. I am 78 years old and have been an MDS (Myelodysplastic syndrome, blood cancer) patient for 19 years. I would like to convey to you my experiences with MDS. I also hope my longevity with MDS will give you hope and encouragement.

To read part 1 of Ryan’s Story, click here.

During my first three years, I could not find any non-MDS specialists who knew anything about the disease.  There also was not much research on this disease. The first research done was for high-risk MDS. I am classified as Low-risk MDS, Refractory Anemia with Ringed Sideroblast, (RARS). Much research is now being done for all MDS types.

When I was first diagnosed I was in denial for about 18 months. My family and I started researching MDS and I started talking with my doctor about my options. I realized my body was the temple of the Lord and I had a responsibility to take care of it. That is when my denial shifted to a positive attitude and I accepted my situation with God’s help. I joined the MDS Foundation and through their Patient and Family Forums, a quarterly publication, and their website, I have learned so much about the disease. Doctors and nurses attend the forums and inform us of the latest information.

I have done several videos for the drug company who makes the iron chelation drugs I’ve been on. This involvement made me realize how much I appreciate what is taking place to find better ways to deal with iron overload.

I took part in an MDS National Registry for 5 years that collected data on MDS patients to determine the differences and similarities in patients. Or.. what works and what doesn’t work.

Besides learning all that I can and getting involved I have used my faith to pray for and encourage other patients. I ask God to put in my path anyone He wants me to talk with, pray for, or encourage every week when I go to the Oncology Center.

I believe this involvement is what is keeping me going. My positive attitude and Faith has been strengthened every day.

My wife and I are family oriented. We attend all local family birthday parties, go to gymnastics practices and competitions, T-Ball, baseball, and soccer games, cheerleading, volleyball, and homecoming events of the grandchildren. We cheer them on to let them know we are there for them and very proud of them  We also have the pleasure of having some of the local grandchildren spend the night with us. We take them to the skating rink, bowling, and to the park. I will admit there are times I do not feel my best, but I push myself to go to be a part of their lives.

To summarize: have a good support system whether it be family, friends, or church family; learn all that you can about MDS (one way is to join the foundation, or go to their website); stay up to date on the research; stay positive, be motivated, and get involved especially in patient forums. Ask questions of your doctors and nurses, and most of all, keep God as your pilot. Yes, it is true I have not been physically healed, but God has healed me spiritually and my spirit is what will live on for eternity.

May God Bless you now and forever.

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