New CAD treatments, like reading progress, prove growth is possible
Both medical and learning breakthroughs are exciting to behold
My heart sank when I came across a report on X recently.
“Students who begin behind tend to stay behind,” the report from the Center for Analysis of Longitudinal Data in Education Research (CALDER) noted. It added that third-grade test scores “remain powerful predictors of long-term academic trajectories.”
Imagine a person’s life being irrevocably cast before they are even 10 years old! I cannot accept this. I believe that if a person is breathing, there is always an opportunity for growth and learning. I have a personal stake in this. Every day, I tutor a 10-year-old who is struggling with their reading. I refuse to think my student cannot improve.
Focusing on what is possible
At present, I am lying on my bed with a heavy tightness around my chest, coughing occasionally, and hoping it doesn’t continue to the point of vomiting. I’m rationing out a prescribed muscle relaxer because I won’t be able to get it refilled until the middle of December.
I went out earlier, motorcycling to a nearby bank, then the florist. Once I was home, I staggered through the yard and collapsed on my bed. I won’t get up again for longer than two minutes until tomorrow morning.
My feelings this morning about my cold agglutinin disease (CAD) were hopelessness and despair, much like my student and their parents. But I know these feelings are wrong! We must focus on what is possible, not on the difficulties. Just as reading delays can be addressed through intense and focused tutoring, so too can fatigue and other symptoms of CAD be mitigated.
Plus, there is much to anticipate.
First, I have a checkup in December. Even though I’m prepared to receive an infusion, it’s been four years since my last one, and that is a good sign. Also, there are new treatments that are either available or on the horizon. While I would not like Enjaymo (sutimlimab-jome), I could adapt to it. Additionally, a proof-of-concept trial is currently underway, which holds considerable promise in freeing CAD patients from the need for infusions. I’ll discuss this with my doctor next month.
Finally, a man in China was treated with iptacopan. This oral therapy targets the complement cascade, which contributes to the process of hemolysis. He had a complete recovery.
My student doesn’t have any reason for hopelessness and despair, either. When we began, the child was reading at pre-first grade to first grade level. Now, they are reading fluently at a late second-grade level. I introduced “The Golly Sisters Go West,” a fourth-grade-level story, to challenge them, and they recently read another volume in the series independently, requiring only a little help. The reluctance and defeatist attitude are disappearing.
These are the breakthroughs a teacher looks for. A new world has opened for them, and I look forward to seeing their progress in the years to come.
The medical breakthroughs are exciting as well. Enjaymo has become available since I was diagnosed. The ANX1502 proof-of-concept trial is expected to wrap up next year. Iptacopan may be considered as a treatment for CAD. With so much on the horizon, I expect to be here when my student graduates from high school.
I responded to the X post about the CALDER report: “Nevertheless, I will continue to work with my 10-year-old and pray that [they defy] the predictions. [They’re] not dead yet!”
Note: Cold Agglutinin Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cold Agglutinin Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cold agglutinin disease.
About the Author
Nancy
Mary - thank God I found this site and your postings. Sometimes I feel like I'm on an island with this disease. I go through periods of thinking "am I faking this"? I am not. I realized after finally being diagnosed that I have had this for a good portion of my life. All of my doctors said I was fine - but I wasn't fine. No one could be this tired all the time. Here's how it finally got diagnosed: I had a persistent pain in my leg, then I couldn't put weight on my leg. It was finally determined that I had a blood clot. I was put on blood thinners and sent on my way. My OB/GYN doctor asked me if anyone dug further into why I developed a blood clot. No one had. I had to figure this out. After a lot of research I contacted Rocky Mountain Cancer Center and made an appointment with Dr. Ma, a hematologist/oncologist. She is the one who kept digging and found that I had CAD along with iron overload which complicates things. Thank God for Dr. Ma. I live in Florida now. I have had numerous rounds of Rituxin and when I did not respond to the last round we tried Velcade (belly shots). It has been a year since the Velcade shots and my numbers are trending in the wrong direction again, not scary yet so we are still watching with blood tests every three months. Like you, the fatigue and shortness of breath are the bad guys.
Keep posting so I know I have a mate out there! THANK YOU!
Nancy