Written by: Phillip McCoy
My journey with Familial Chylomicronemia Syndrome (FCS) began more than 20 years ago when my wife first became sick for an unknown reason. After our first child was born, Nicole experienced her first bout with pancreatitis which is where the journey began. For many years we did not know what was wrong and why she continued to have pancreatitis 3 or 4 times a year. There were hospital visits that lasted up to 30 days because she had a cyst on her pancreas, and doctors arguing in the corner of her hospital room as they tried to figure out what was wrong with her. The one thing they did know was that her triglycerides were in the 10’s of thousands at each emergency room visit. She had many doctors accuse her of drinking alcohol (she has never had alcohol) or eating fatty foods in excess or seeking drugs. None of this was true. Yet, each visit to the emergency room was more of a struggle that you did not want to go at all. It was more painful and frustrating to have to explain yourself and face disbelief and stereotyping than being sick. It was painful to see her suffer. Physically, emotionally, financially, and mentally, we struggled. Having her integrity questioned was the most painful of all. Still to this day, even with a valid, genetic diagnosis she is questioned by doctors who have no knowledge of FCS. Even when provided with information, there is a resistance to understanding and believe what we tell them. It is still a constant struggle.
When finally diagnosed fifteen years after the first pancreatic attack, there was a deep sense of relief, but also fear. Fear of the unknown because it was such a rare illness, there was no cure and little understanding from the medical community. Because of the many uncertainties, we were unsure about the future, whether she would live a long life or would it tragically be cut short with another bout of life-threatening pancreatitis. Day in and day out Nicole suffered with side effects that challenged everyday living, and it was difficult for others to understand what she was going through because on the outside she looked fine.
We pressed on. We had no choice but to. We dug deep into our faith and had to rely only on God. We did not have the answers, the doctors did not have answers, our family and friends did not have answers, but God did! Despite the great physical, emotional, financial, and social pain and struggles, we have endured. FCS has been a hardship, but it has also been a blessing. Along the way we have met many wonderful people who understand our struggle. We have grown in our faith, our compassion and in our understanding of what others may be going through. Our children are strong and through this have developed the ability to persevere and endure difficult situations which has prepared them well for life.
It has been a difficult road being a caregiver and watching all that Nicole has gone through, but FCS has given us opportunities to share our story and God’s faithfulness through it all. We are grateful for all paths we have crossed, our connections with other FCS friends, the pharmaceutical advocates and the doctors who are championing a way for a hopeful future for all those living with FCS.
This project was supported by Arrowhead Pharmaceuticals and Ionis Pharmaceuticals.
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