Saving Lives Through Early Diagnosis – Michelle Berman is Philanthropist of the Year
Beyond Type 1 is thrilled to name Michelle Berman as 2019 Philanthropist of the Year! Michelle’s work as a National Advocate and lead volunteer on our DKA Campaign has impacted – and even saved – countless lives through awareness for the warning signs of Type 1 diabetes.
In November 2016, the first statewide DKA Campaign launched in Pennsylvania with the help of family advocates with personal ties to Type 1 diabetes. Michelle Berman was among the dedicated, visionary individuals who volunteered their time to make this idea a reality. Since then, Michelle has continued to lead Beyond Type 1’s DKA Campaign as a volunteer. Her work has lead to the launch of DKA Awareness campaigns in 24 additional states and global efforts in Canada, Spain, Argentina, Mexico, and New Zealand – and it’s just getting started.
Michelle’s son Jonathan was diagnosed in 2007 at the age of seven. Since then, Michelle’s work in the diabetes community has focused on making sure every Type 1 diabetes case is diagnosed early and safely. Her tireless efforts have undoubtedly saved lives.
Michelle’s favorite quote and mantra to all three of her children is, “Be part of the change you wish to see in the world.” Her work has put these words into action – Beyond Type 1 is honored to name Michelle Berman the 2019 Philanthropist of the Year. Please join us in thanking Michelle for all her hard work! Check out our recent interview with Michelle about her work in DKA Awareness, parenting a son with Type 1 diabetes, and balancing volunteer work with a busy schedule.
How did you get involved in raising awareness for the warning signs of Type 1 diabetes?
In December 2015, I attended a meeting at our state capital in Harrisburg, PA to discuss the importance of Type 1 diabetes education and awareness in Pennsylvania, especially as it relates to the prevention of new-onset diabetic ketoacidosis (DKA) at diagnosis. DKA is a life-threatening complication of a delayed or missed T1D diagnosis. Amongst those in attendance were Pennsylvania advocate Deborah Healy, PA Physician General Dr. Rachel Levine, and Mrs. Suzanne Yunghans, Executive Director of the Pennsylvania Chapter of the American Academy of Pediatrics (PAAAP). It was during this meeting that we were encouraged by Dr. Levine, who supported our efforts regarding the importance of public and healthcare provider awareness of Type 1 diabetes warning signs, to pursue a statewide warning signs campaign. Suzanne Yunghans, Executive Director of PAAAP, suggested working together on education efforts to create a digital T1D awareness campaign for their membership that would ultimately benefit PA families.
Around the same time, I connected with Sarah Lucas and Thom Scher from Beyond Type 1 who shared similar concerns and goals. Sarah suggested the possibility of a collaboration to expand efforts to include a fully funded statewide campaign, consisting of warning signs posters, patient handouts, audio/video education, and a physician portal for all PAAAP members. By the summer of 2016, a partnership was formed between PAAAP, Beyond Type 1 and parent advocates. In November of 2016, tied in with National Diabetes Awareness Month, the first official statewide DKA Awareness Campaign launch took place in Pennsylvania educating parents about the warning signs and reminding physicians to consider a T1D diagnosis. The campaign was a great success, so much so that Beyond Type 1 offered to continue to fully fund and expand the campaign nationwide with individual state chapters of the AAP.
Since the first launch in Pennsylvania in November 2016, the campaign has been approved in 25 state chapters of the American Academy of Pediatrics. Most recently, we have received individual chapter approval to launch the campaign in Nebraska, Wisconsin, and Puerto Rico and we are currently in the board review phase in multiple remaining states, with a goal to complete phase I, the AAP campaign launches, by the end of 2019. I am committed to raising awareness of Type 1 diabetes warning signs in an effort to reduce new-onset DKA at diagnosis. To date, materials have been distributed to thousands of pediatric offices that serve thousands of patients annually. In 2017, the campaign launched in New Zealand. In 2019, the campaign launched in Canada in partnership with British Columbia Pediatric Society and the British Columbia Chapter of the American Academy of Pediatrics, spearheaded by Marla Oringer and Jill Aberman, Beyond Type 1 Canadian family advocates. I’m happy to share multiple Canadian provinces are in the review phase currently.
Why is this campaign so important to you?
When I first learned of children, teens and adults tragically losing their lives due to undiagnosed/missed diagnosed Type 1 diabetes, I was in disbelief. I was devastated to learn this was happening to many families, year after year. Among others, I learned about the deaths of 5-year-old Kycie Terry, 16 month-old Reegan Oxendine, a resident of North Carolina, and 9-year-old Jordan Weiss, a resident of Massachusetts, whose mother, Sara Weiss, is also amazingly our Massachusetts lead advocate. Sara turned her own horrific tragedy into a remarkable way to raise awareness and bring attention to what happened to her son to save the lives of others. All the children I mentioned died as a result of complications related to undiagnosed Type 1 diabetes, and equally amazing to me is the strength and perseverance of their parents who choose to tirelessly advocate and raise awareness of the warning signs so no other family has to endure the same fate.
I remember thinking something had to be done before another family loses a loved one. I was also jarred by the fact that this could have happened to my son. He was my third child, and yet I knew nothing about T1D or any of the warning signs. For over a decade as a parent, I read every parenting book, baby book, and pediatric pamphlet and never once saw anything about Type 1 diabetes. In retrospect, my son had several of the warning signs, but I dismissed them and chalked them up to the plights of childhood. Right before being diagnosed at age 7, my son had increased thirst, new-onset bedwetting and weight loss. And I just thought he was very active, drinking too much and not eating enough! I didn’t have cause for alarm. The morning my son fainted, I took him to his pediatrician thinking it may be his blood pressure or dehydration. That decision may have saved his life. He hadn’t fainted because of his blood pressure. He was severely dehydrated as a result of a delayed diagnosis of Type 1 diabetes and entering the beginning stages of diabetic ketoacidosis (DKA). I remember his pediatrician smelling his breath as I wondered what was going on. She performed a urine test and a finger stick blood test and afterward, she took me aside into another room to tell me my son likely had Type 1 diabetes. And she had tears in her eyes when she told me this. She assured me everything would eventually be okay, but knew our lives were about to change. I had no idea what any of it meant. None. I kept asking her: What is Type 1 diabetes?
How could I have absolutely no knowledge of a fairly common illness that has multiple obvious warning signs? Luckily, my son had not yet reached the latter stages of DKA and wasn’t displaying the life-threatening symptoms such as vomiting, headache, severe lethargy, confusion and unconsciousness. But in many families, children go undiagnosed for far too long because of a lack of awareness of these warning signs and these signs are just chalked up to the flu or other childhood illnesses. In addition, healthcare professionals are not trained enough about recognizing the warning signs of Type 1 diabetes especially those who present in new onset DKA. Thankfully, my child’s pediatrician did notice that the fruity odor on his breath was a symptom of Type 1 diabetes and my son was able to quickly get diagnosed. However, children, teens and adults are not getting diagnosed in a safe and timely manner and, in my opinion, there is no reason for this, not in 2019 when a simple blood or urine test to rule out T1D can be performed with symptoms present, especially during flu season.
It quickly became clear to me that this was an education and awareness issue. As a result of the lack of awareness, the early (and late-stage) warning signs are being missed and lives are being needlessly lost. Left untreated, DKA at diagnosis of Type 1 can lead to death. The public needs to be made aware of the early signs of T1D and know what to do when their child is exhibiting these signs. Physicians must be reminded to consider T1D as a possible diagnosis when early warning signs present and to consider new onset T1D in DKA when late warning signs present or when parents relay symptoms to triage nurses on the phone. I never again want another parent, family member, friend or adult to have to experience the guilt and of having to ask, “Why didn’t I know the warning signs of Type 1 diabetes?”
How did your life change when your son was diagnosed with Type 1 diabetes?
In the exact moment of being told of my son’s diagnosis I was confused, scared and completely unaware that Type 1 diabetes existed. It is something that haunts me to this very day. It is one thing if warning signs don’t exist for a chronic autoimmune condition, but it is another, as a parent, to find out after the fact that there are a number of warning signs of Type 1 diabetes, and when educated about them, it can result in a prompt diagnosis, perhaps even a lifesaving diagnosis. Looking back, our entire family’s life changed. My son’s life obviously changed the most. Dealing with and managing Type 1 diabetes at age 7 is overwhelming, let alone the fact that it is a 24/7 undertaking. I am happy to share that the more years under your belt, the more you adjust to your “new normal.” It is important to note that I did not lose sight of the fact that ultimately my son’s diagnosis and ability to have access to insulin is what saved his life and continues to keep him alive.
I have a very difficult time knowing that other families were not as fortunate. The lack of public awareness and that of healthcare professionals is causing unnecessary deaths at the time of diagnosis of Type 1 diabetes. Families are burying their children as a result. This is what really must change. The life changes (or as I like to say, “adjustments”) when promptly diagnosed are something we tackled with positivity and curiosity, together, as a team. There are good days and there are challenging days…until a cure. However, I am happy to share that my son is a freshman in college and has the advantage of having learned at a very young age how to manage his diabetes and effectively deal with change as well as the unexpected.
What’s next with your volunteer work as a National Advocate?
I am excited to share that in September of 2018, Beyond Type 1 received a grant from The Leona M. and Harry B Helmsley Charitable Trust to launch phase II of the DKA Awareness Campaign. The grant from Helmsley will allow Beyond Type 1 to reach a new set of healthcare professionals, expand state-by-state grassroots awareness efforts, and continue to publish real-life stories to raise awareness about the warning signs of Type 1 diabetes so that lives are saved and that there are less health complications (DKA) with an earlier diagnosis. The expansion of this program, thanks to the support of Helmsley, is critical and we are all grateful for the opportunity to extend our outreach efforts to educate the public and healthcare professionals. Over the next 8 months, I will join forces with Beyond Type 1 and our passionate team of advocates in 10 pilot states across the country to continue to lead the charge around warning signs education and DKA prevention in the United States. We have formed a strong and dedicated team of advocates nationwide. Almost all of our state lead advocates from phase I have signed on to champion phase II, with the exception of a few who have moved out of state. I am so grateful for the amazing support we have received, not only from our original and new state lead advocates, but from the hundreds of advocates who reached out and asked to join campaign efforts and have signed on as phase II state advocates.
How do you fit volunteer work into your day-to-day life?
Where there’s a will, there’s a way and the truth is volunteering is the easy part. Raising awareness of the warning signs and reaching our goal is what I’m focused on. When you’re passionate about a cause, you find the time to create space for the volunteer work in your day-to-day schedule. Working with the incredible and creative team at Beyond Type 1 and seeing the impact being made coupled with connecting and working with hundreds of passionate advocates whose lives have been touched by T1D really makes every day worth volunteering. My gratitude and appreciation goes to Beyond Type 1 and every single DKA awareness campaign advocate for helping to create the lifesaving change we all wish to see in the world. It is truly a labor of love and a tremendous amount of teamwork.
What important message do you hope is received by others?
The message really is twofold:
For the public, know the warning signs of T1D and see your healthcare provider when the signs are present.
For healthcare professionals, remember to consider a T1D diagnosis when symptoms present, including during flu season, as a delayed or missed T1D diagnosis can result in life-threatening DKA, which can mimic the flu and other common childhood conditions.
Learn more about the DKA Campaign + read up on Michelle’s previous work with Beyond Type 1.