Shining a Spotlight on the Intangible Impact of Type 1 Diabetes on Caregivers

Thanks to her career in diabetes at Sanofi, which has spanned 19 years, Jill Putegnat was able to put her background to use when her son started showing signs of type 1 diabetes (T1D). Living through this experience, Jill quickly learned about the significant, life-changing impacts of caring for a loved one with T1D.

“My husband and I were having trouble potty training our two-year-old son,” Jill explains. “He was drinking so much water during the day that, at night, we were having to change his bed sheets multiple times. I remember standing in the diaper aisle and everything I had learned in my career kicked into gear and it dawned on me that our son might have T1D. I took him straight to the pediatrician, who confirmed his diagnosis. Luckily our son was not in diabetic ketoacidosis (DKA) – a potentially life-threatening complication of T1D – but his blood sugar was extremely high and the doctor did send us to the emergency room immediately.”

Seemingly in the blink of an eye, Jill quickly found herself thrust into the realities of what it means to be a caregiver of a child with T1D – and the intangible, sometimes invisible, burdens that can be a very real part of this journey and incredibly important responsibility.  

Navigating the New Normal

“After our son was diagnosed, the next couple of days were completely overwhelming,” Jill recalls. “All of a sudden, our lives were turned upside down, and at the center of it all was our child, who was in the hospital and could not understand what was happening to him. It’s an indescribable feeling; we actually went through what felt like a grief process for our old life and for our child pre-diagnosis.”

For caregivers like Jill, navigating this new normal can be a challenging, confusing, and even distressing experience. Amidst the chaos, taking back what control her family could was essential, which is why they educated themselves to the full extent about how to care for a child with T1D. They were surprised to learn that familial history is the highest risk factor – and they wondered if they should screen their daughter. At the time, though, they waited to screen their daughter (now 17 years old) – because they felt there was not much they could do to clinically intervene if she did end up having T1D too. However, once they learned about a treatment option that became available in 2022, Jill and her husband sat down with their daughter and together made the decision to get her screened. That treatment was TZIELD® (teplizumab-mzwv) injection 2mg/2mL – a prescription medicine used to delay the onset of Stage 3 type 1 diabetes (T1D) in adults and children 1 year of age and older who have Stage 2 T1D. It is not known if TZIELD is safe and effective in children under 1 year of age who have Stage 2 T1D. There is limited evidence of TZIELD being safe and effective in people 45 years of age and older with Stage 2 T1D. TZIELD is not effective as a disease modifying therapy in non-autoimmune dysglycemic conditions. These are conditions when your blood sugar goes too high and is not caused by your immune system. Do not take TZIELD if you have a weakened immune system (immunocompromised) or have an active viral infection such as EBV or CMV infection. 

TZIELD may cause serious side effects including viral reactivation of Epstein-Barr virus (EBV) and cytomegalovirus (CMV) which are common and may stay inactive in your body after an initial infection. Viral reactivation can occur during treatment and for up to 2 months after your last dose and can be potentially life-threatening, especially in people with a weakened immune system, including if you have Down syndrome. TZIELD may also cause other serious side effects including cytokine release syndrome, serious infections, a decrease in your white blood cell counts which can affect your body's ability to fight infections, and allergic reactions. Tell your doctor right away if you develop fever swollen glands or lymph nodes, tiredness, muscle and joint pain, severe stomach pain, diarrhea, nausea, with or without vomiting, redness, warmth or swelling of the skin, swelling of the face, lips, tongue or throat, headache, cough, shortness of breath or trouble breathing, a serious infection or one that does not go away or have recently received or are planning any vaccines, as TZIELD may affect how well they work. The most common side effects of TZIELD include decrease in white blood cell counts, vomiting, rash, diarrhea, increase in liver enzyme levels and headache. These are not all the possible side effects with TZIELD. Talk to your doctor for more information. Keep reading for full ISI. 

Jill, her husband and their daughter continue to screen on an annual basis and while her husband and daughter have not tested positive for T1D-related autoantibodies, Jill recently has. Equipped with this information, Jill is working especially closely with her healthcare team.

“This is truly a 24/7 job and there’s never a break,” Jill says. “As a mother, all you want is to make sure that your child is healthy and happy, which is why from the moment he was diagnosed, I was determined to make sure that my son could grow up without missing a beat.”

Caregiving for a Teenager

Today, more than 12 years after her son’s diagnosis, Jill and her family are still mastering the delicate balance of T1D care because no two days are ever the same. “It’ll be 3pm on a Monday and I’ll get a call from my son that his insulin pump is running out of battery because he forgot to charge it overnight. Suddenly, without warning, a regular day can turn into a crisis. We always have to be at the ready,” Jill maintains.

At times, this unpredictability has informed how Jill parents her son, which she admits can be hard, so that she can ensure she or her husband are closely monitoring his glucose levels. For her son, who’s now 14, it can mean having to skip school field trips, sleepovers, or other social activities, where he would be independently responsible for his own care. For Jill, this means acting as caregiver and parent to her teen son at a time when he’s eager to find his freedom.

“I always say that I’ve assumed the role of Chief Operating Pancreas for my son until he is fully ready to take on that responsibility all by himself,” explains Jill. “While T1D monitoring and insulin-dispensing technology has made huge leaps in recent years, there is no known cure for this disease. With this in mind, as a parent, it can be tremendously difficult to watch your child miss out on important aspects of their childhood that they’ll never get back. As a caregiver, however, you also need to do everything you can to keep him alive and healthy. This is the invisible burden so many parents (who are also caregivers) face on a daily basis.”

With the guidance of their endocrinologist, Jill and her family are continuously working with their son to prepare him to independently manage his T1D now that he's a budding teenager. However, it’s not always a linear process, requiring trial-and-error, patience, and, above all, empathy for her son as he embarks on his own care journey. “Truthfully, he’s in the driver’s seat,” she adds. “Whenever he is ready to take the next step in managing his care – and there are many steps, to be sure – we are here, ready to support him. This is what being a caregiver is all about.”