Paul Kidwell is an independent public relations/patient advocacy consultant and podcast producer working in the life science industry. He has been part of Medable’s Patient Advisory Council since early 2020.
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The world changes for people diagnosed with diabetes. Moreover, their families, loved ones, and friends are also impacted; and not merely as spectators. We realize, however, that as is the case of most diseases or medical conditions, health issues not only impact the patient, but those close family members, friends and loved ones as well.
Diabetes affects everyone in some way. It not only affects the individual with the disease, it also affects those who live with the person or somehow involved in the life of the person affected by the disease. There are over 34 million people in the United States living with diabetes, with 1.5 million new cases presenting each year. A small, but significant group of that larger contingent consists of people under 20 who have contracted the illness. In fact, over 208,000 young boys and girls have Type 1 or Type 2 diabetes and for them their illness is truly a family affair.
How well families cope with these changes can mean the difference between rapidly worsening disease and a relatively healthy life. It's an opportunity for families to strengthen their relationships with each other and to improve every member's overall health. But it is not without a serious commitment to patient health and well-being. That was certainly the case with the Shumsky family of Ann Arbor, Michigan; and sister/daughter Erica, who was diagnosed with Type 1 Diabetes at the age of 9.
Her diagnosis came as a complete shock to her mother, Jen, as she saw this otherwise healthy young child diagnosed with this disease and tried to figure out what Erica’s illness would mean for her as the rest of the family which included Jen’s husband and elder son. That was six years ago, and recently Jen and Erica spent time with me discussing the influence and challenges of diabetes on the Shumsky family.
Medable: Briefly please share Erica’s story.
Jen: I had been an RN for 19 years when Erica was diagnosed with Type 1 Diabetes (T1D) in 2014. We also have a son with a rare disease, Duchenne Muscular Dystrophy, so my husband and I were no strangers to taking on additional duties when it came to additional medical needs in our children. Erica was having some nighttime incontinence that originally appeared to be connected with a growth spurt as she had grown a bit taller and was looking thinner. However, after a couple weeks it was not getting better. The kids had spring break and were home for a week and we watched her drink and drink and drink apple juice. My husband and I were both familiar with the signs of diabetes, but really couldn’t believe it would affect our family. We had a glucometer at home that we kept for occasional checks of our son and if family members needed to check. We decided to check her fasting blood sugar and it was high (238).
Medable: Was the diagnosis immediate?
Jen: We called the pediatrician and they sent us to the ER. They confirmed the diagnosis in the ER with blood and urine testing. Her A1C (a blood measurement to look at how blood sugars have been running) was 8.9, which is high, but not as high as many will have when they are first diagnosed. We were told that we caught her T1D incredibly early.
Medable: What resources were you offered by your medical team to find out more aboutDiabetes 1?
Jen: In addition to a very supportive pediatric endocrine clinic with nurse educators that were regularly accessible, we were connected with the Juvenile Diabetes Research Foundation (JDRF). We were also very lucky to have a couple close friends that had T1D that we could lean on for support and advice.
Erica: I remember I got a bag from the JDRF (called the bag of hope) that had a stuffed bear named Rufus that I really liked. Rufus has areas on his body where you can practice giving insulin injections.
Medable: What is the difference between Type 1 and Type 2 Diabetes:
Jen: Type 1 diabetes (T1D, insulin-dependent or juvenile) can occur at any age, but most commonly is diagnosed from infancy to the late 30s. With T1D, a person’s pancreas produces little or no insulin. Although the causes are not entirely known, scientists believe the body’s own defense system (the immune system) attacks and destroys the insulin-producing cells in the pancreas. People with T1D must inject insulin several times every day or continually infuse insulin through a pump. While its causes are not yet entirely understood, scientists believe that both genetic factors and environmental triggers are involved. Its onset has nothing to do with diet or lifestyle. There is nothing you can do to prevent T1D, and — at present — nothing you can do to get rid of it.
Type 2 diabetes is much more common than Type 1. Type 2 diabetes typically develops after age 40, but can appear earlier, and has recently begun to appear with more frequency in children. In this form of diabetes, the pancreas still produces insulin, but the body does not produce enough or is not able to use it effectively. Treatment includes diet control, exercise, self-monitoring of blood glucose and, in some cases, oral drugs or insulin.
Erica: It frustrates me at times that people do not understand that there are different types of diabetes. There is a lack of understanding that type 1 is something that just happens to people. I do sometimes get frustrated by all the diabetes memes and jokes out there about getting diabetes from eating junk food and lifestyle choices. Many times people will see me eat something they deem unhealthy and ask if I should be eating that. It doesn’t matter what I eat with my type 1, I will always have to take insulin for it. I eat a fairly healthy diet and participate in school sports including field hockey and lacrosse, which is just the opposite of what many people may think when they learn I have Type 1. Plus, because of this disease I will always be insulin dependent because my body does not make it naturally.
Medable: What was this new life this disease was presenting to you?
Jen: Suddenly I had to do algebra every single day to figure out how much insulin to give based on how many carbs were in the food she was eating. Never realized I really would need that much math in my adult life. We had to check her blood sugars every 3 hours at night at a minimum. In those early days, my husband and I would do this together to learn the process. We progressed to taking turns.
Erica: I am now 15, but at the time of the diagnosis, I was very scared of these words, I really did not know how my life was going to change in the beginning. When I learned more about what I would have to do to keep myself healthy, such as daily injections or counting the carbs that I eat.
Medable: What was the emotional impact of this diagnosis?
Jen: As a parent it is just devastating when your child is given any type of challenge in their life. You want their life to be as easy as possible. A serious medical diagnosis is hard, especially when it is going to be an ongoing lifelong condition, that is impacted by stress, hormones, food, exercise, alcohol, and countless other things. Your child loses a bit of childhood when encountered with so much responsibility. For my husband and I, we had already had one horrible diagnosis day when our son was diagnosed, so in perspective, this T1D diagnosis was so very hard, but knowing that if we worked really hard we could control some aspects of this disease was so encouraging.
Erica: For me, I was very scared when the doctor came in and delivered the diagnosis. I remember crying and wondering why this was happening to me. I think the emotional impact for some is bigger than others. From my personal experience with this disease, I have learned that it is ok to have multiple mixed feelings, there is no one right way to feel.
Medable: What has been the impact of the past few years living with the illness?
Jen: Technology has come so far in the 6 years since Erica has been diagnosed. She started on a CGM (Continuous Glucose Monitor) about 4 months after her diagnosis as she had (and still has) hypo unawareness (she does not feel low blood sugars). When she started with a CGM she carried a small receiver with her that would read her sugars, now her phone reads her blood sugars and sends those readings to our phones, so we always know how she is trending. She also has been on an insulin pump for about 5 years. The technology in pumps is constantly improving. She now has a Tslim X2 pump that works with her CGM in what is called Control IQ. This Control IQ system works by giving her extra insulin if her blood sugar is high and reducing her insulin if she is trending low. Erica has come so far in learning how to manage her condition also. As she is about to turn 16 next month, we need her to be responsible as she takes on driving and other activities.
Erica: These past few years have been easier than the first to second years of living with type-one. Everything has gotten a little bit easier, for example, counting carbs has gotten way easier for me because I have been doing it for so long. Another thing that has been easier is knowing how to correct my blood sugar and how to keep it in a manageable range. I also have a pump as well. The pump makes life so much easier to manage. The pump I have is the Tandem X2, this is a great pump that has definitely changed my life for the better.
Medable: Jen, how do you separate your role as a mother with that of a caregiver?
Jen: Well actually, I think all parents are caregivers. What level of care you have to give your child is different in each household. I chose to become a nurse many years ago because I am a caregiver at heart, it brings me joy. My husband and I decided early on that we were not going to parent our kids any differently than we planned because they have medical issues. They have chores and expectations, they are punished and rewarded the same as their peers.
Medable: Erica, how do you separate your “lives” as a teen-ager, student, patient?
Erica: I think that I separate my “lives” in different ways, but ultimately, they are all connected to each other in some way. As a teen, I have to make sure that my sugars are controlled if I'm going somewhere. If my sugars are too high or too low, it is very difficult to concentrate on schoolwork, If I am taking a test or a quiz, I must try to make sure to keep my sugar in the normal range. Lastly, as a patient, I like to think that I am a pretty decent one. If I see someone else in public that is a fellow “diabuddy” especially if they are younger than me, I will try to smile at them and I will show them that even though we have this disease, we can still be happy, healthy and amazing people.
Medable: Erica, how supportive have your friends/classmates been?
Erica: My friends have been very supportive of me, from the time that I was diagnosed, there were friends that came to visit me in the hospital. Whenever I have told my classmates that I have T1D, they have also been very supportive as well. Some of my closest friends are like built-in reminders to check my sugars to make sure I’m alright. I love my friends to death, and I am definitely very glad to have them and that they love me too and look out for me.