It took Tampa local Charles “Alvin” Middleton more than 10 years to receive an accurate diagnosis of familial chylomicronemia syndrome (FCS), a rare genetic lipid disorder that causes fat buildup in the body and often leads to unpredictable and potentially fatal attacks of pancreatitis. Alvin has been in and out of the hospital for more than a decade, and once was put into a medically induced coma for more than 40 days. His husband and family were told at the time that he had a 5% chance of survival. Alvin still suffers from daily symptoms including severe fatigue, abdominal pain and brain fog, and recently had to leave his job. His only option is to adopt a lifelong extremely restrictive low-fat diet (10-12 grams of fat per day), but even that is not often not prevent his symptoms.
Alvin decided to write a letter to his disease, looking back on his journey and voicing his frustrations as well as his hope for a treatment for this devastating disorder. There are no approved treatments available for FCS, which is why Alvin and the entire FCS community as part of a new national campaign are urging the FDA and pharma industry to approve a treatment currently in development – you can learn more via this recent press release.
Here is Alvin’s “Dear FCS” letter:
Looking back 11 years ago, I considered myself normal. Someone who had a job, hung out with friends and family, and was in relatively good health. But then our journey together started when I experienced my first symptom because of you, severe stomach pain while on a flight home to Tampa Bay. An ambulance was my welcome home vehicle as I was immediately brought to the emergency room, where I was diagnosed with acute pancreatitis. The doctor said that my case was so bad there was only a 5% chance I would survive. I didn’t know it at the time, but because of you I would eventually undergo seven surgeries, have my gallbladder and spleen removed, be in and out of the hospital with pancreatitis, and see doctors every other week. I am grateful that after a decade a young hospitalist finally figured out that you are the cause of my constant pain and frequent hospitalizations – but I am writing this letter to tell you I want nothing to do with you!
You have caused me, my husband, family and friends tremendous pain over the years. Not only have you caused a significant decline in my physical health but now I am also often emotionally and spiritually withdrawn. Life with you can be a lonely experience. I try to be strong for my friends and family, and especially my husband who has been my rock throughout this journey. You also cost me thousands of dollars that I could have used to help others and now I have accumulated $2 million in medical debt. You even tried to kill me 10 years ago, forcing me into the ICU for more than 40 days in a medically induced coma, but God had a different plan for me.
I feel like I try to please you, but nothing works. I follow the strict low-fat, no carbohydrates, and no sugars diet and exercise regularly as directed by my doctor. I take my prescribed medication. Yes, I sometimes cheat and eat food I’m not supposed to, but generally I do everything I am told — and yet you still cause me pain. Doctors who didn’t know about you would tell me I must not be maintaining the suggested diet, exercising enough, or taking care of myself. Every time I was hospitalized with severe vomiting and pain, doctors would accuse me of drinking alcohol or not following my strict diet. Sometimes I thought I was crazy or a hypochondriac, but it was all you. I was so discouraged and frustrated by many doctors’ responses that I disconnected from the conversation and gave up all hope that I would ever find the cause of my pancreatitis attacks and other symptoms.
I have known for years that something was seriously wrong with me. There have been times when I have been so fatigued from the constant pain that I just wanted to give up on life. You took away my love of gardening, cooking, socializing with my friends, being able to go someone’s house and eat without getting sick, and most recently you forced me to leave my job. You are the reason for my constant fear, anxiety and stress about my health which, combined with feeling out of control and powerless, can be overwhelming. Often, I forget that feeling terrible every day isn’t normal.
Life with you can be a lonely experience. It has ended my career and changed me forever in many ways. Despite the many challenges I’ve faced, the most rewarding experience of my journey has been meeting other FCS patients and knowing that I’m not alone. By sharing our stories with one another and how you have impacted our lives, we are encouraged and hopeful that someone is going to find a treatment to beat you. Together we are building a stronger community of support and sharing information that can help improve our quality of life and educate others who might not know about you. If one person sees my story and learns about you, then all my efforts are worthwhile.
Charles “Alvin” Middleton