Living with Diabetes and Heart Disease – An Interview with Patient Advocate Jacqueline Alikhaani
What’s it like to live at the intersection of type 2 diabetes and heart disease? diaTribe interviewed health advocate Jacqueline Alikhaani about her journey, the health strategies she’s found helpful, and advice she has for others
Jacqueline Alikhaani was diagnosed with a rare congenital heart disease in 2008, and shortly after that she was diagnosed with prediabetes. Because she was so involved in caring for her heart, she says, in her words, that she didn’t focus on preventing her prediabetes from progressing to type 2 diabetes. And, she says, “Right then and there, I wish I would have started addressing, more seriously, my diet and exercise. Those two things are some of the major keys that could have helped turn it around.”
Today, Jacqueline is an ambassador for the Know Diabetes By Heart initiative (KDBH), a collaboration between the American Heart Association (AHA) and the American Diabetes Association (ADA), and she is also a fierce patient advocate. Jacqueline lives in Los Angeles, California, and is currently involved in health advocacy work for AHA and the Patient-Centered Outcomes Research Institute (PCORI). We talked with Jacqueline and her husband, Sadegh, about their experiences living with diabetes and a heart condition, and we discussed ways that people can be proactive about their health.
Diabetes and heart disease often go hand in hand, and even though Jacqueline’s particular condition is congenital (and not directly caused by diabetes) she has been surrounded by family and friends who have experienced both. A person with type 2 diabetes is twice as likely to have heart disease or a stroke than someone without diabetes, and many people with type 2 diabetes are not aware of this increased risk. We’ve partnered with KDBH to educate people on steps they can take to manage both diabetes and heart health, and we encourage individuals to talk with their healthcare team about heart disease and diabetes.
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Jacqueline and Sadegh speak passionately about the importance of being proactive about your health. When Jacqueline found out about her prediabetes, she didn’t really understand what it meant. She shared with us that her first thought was “prediabetes has ‘pre-’ in it, so it’s not like I have it yet. And the doctors didn’t really explain what it was.” But being taught actively about prevention could have helped make all the difference.
Specifically, Jacqueline emphasizes, “That was the most important time to be proactive!” People with these conditions, she says, “need more education from the onset. The alarm bell should be going off when you have prediabetes. In the doctor’s office they should be saying this is serious.” And if you can address it early on, it can prevent the progression that comes further down the road.
Jacqueline recommends that people “get connected, get educated, and get organized” by reaching out to community health resources or finding educational information from organizations like the ADA and the AHA. She also wishes that healthcare professionals had more time to work with people who have diabetes or prediabetes, and that they had more training on how to educate and support people with these conditions. One thing Jacqueline likes so much about the KDBH campaign is that by involving healthcare teams and people with diabetes and heart disease, everyone has a chance to learn from each other.
When Jacqueline was eventually diagnosed with type 2 diabetes, she said that juggling her heart condition and her diabetes was overwhelming – she had a lot of “fear of the unknown.” As a result, the stress she felt often made it even harder to manage her two conditions. However, Jacqueline found some ways to fight the stress and find support. First, she started writing things down. This strategy has helped her stay organized and notice patterns in how certain foods affect her blood sugars. Plus, being organized, keeping track of your numbers, and writing things down are ways to make the most of your healthcare appointments. Jacqueline says she used to be embarrassed about going to see her healthcare professional with a notepad in hand, but she advises that it’s hard trying to remember everything, and you should feel comfortable doing everything you can to help your healthcare team better care for you.
The other thing that Jacqueline found important was taking a diabetes education course – she took the course twice because it was so helpful. “Those classes are really, really critical,” she says. “They have helped me a lot because I feel like I get better and better every time I go. Plus, it’s a good reminder, being in there with other people who are having the same kinds of issues really helps to let you know that you are not alone.”
Jacqueline and Sadegh are huge proponents of making healthy lifestyle choices whenever possible, including eating healthy food and finding ways to incorporate physical activity into your routine. Jacqueline says, “Exercise is just movement! Find ways to move however you can. It doesn’t have to be this great big program, or some elaborate ritual and joining a gym. It’s about finding the little ways in your life to add movement every day that make a huge difference.” Developing achievable exercise goals, like making sure she regularly goes on beach walks with Sadegh, allows Jacqueline to stay active. She also stresses the importance of not over-planning or getting discouraged.
A healthy diet is another thing that Jacqueline advocates. She said that when she was first diagnosed, “I thought sugar meant… just sugar, like what you might put in your tea. And that’s what a lot of people think. But you have to take the time to learn that harmful sugar is also found in a lot of carbs, like rice and bread.” While having diabetes may not mean cutting out these foods entirely, it’s important to really watch your portions and find ways to be creative in the kitchen. Jacqueline now “makes a more conscious effort to avoid sugary drinks and request healthy alternatives [when eating out], such as getting a grilled option instead of a fried food.”
Jacqueline and Sadegh split meals when they go out to eat to watch their portion sizes, since many restaurants provide you with too much food. Jacqueline explains, “We eat out a lot, and so we always share the same plate. We will order one dish and split it; it is easy and it saves money!” Keeping up with a healthy diet can be one of the most challenging things; it’s hard breaking the food habits you have.
A driving factor for making these changes has been the effect that diabetes and heart disease has had on Jacqueline’s family. Beyond her own diagnosis, which was unrelated to diabetes, many of her relatives have had both diabetes and heart disease and have often had to deal with severe health complications that led to death. Jacqueline knows that making these small changes can help her lower her risk, or even avoid, similar complications. And she always says, “I like to give myself credit for the little things I get right, because then I feel encouraged to keep going on… Every day is a new day, so start new every day.”
Jacqueline’s advice for people with diabetes and heart disease is to “take everything one step and a time, one day at a time. You don’t have to make every change in one day, because it could get overwhelming, but try your best to do something each day to stay healthy: that could mean eating your vegetables or incorporating movement into your daily activities. Get educated as much as you can, communicate with your healthcare professional often, and stay organized.”
Getting involved with KDBH and other groups, such as the Patient Centered Outcomes Research Institute (PCORI), Patient Powered Research Network registries, and Health eHeart Alliance, has allowed Jacqueline to learn and engage with others who are dealing with similar health conditions. She says, “It’s amazing because we get to help ourselves, and we get to share our story and our experiences in ways that can help inspire others. Knowing that we have the power as individuals and as family members and as a community to really change the stats around diabetes and heart disease – heart disease being the number one killer of people with diabetes – is incredible.”
Jacqueline and her family have also been able to build a supportive community: “We are family, the American Heart Association and the American Diabetes Association. These two things go together, diabetes and heart disease, and people need to know this throughout their communities, especially communities of color. We need to keep spreading the word.”
To learn more, read “Diabetes and Heart Disease – Keep Your Heart in the Right Place.”
This article is part of a series to help people with diabetes learn how to support heart health, made possible in part by the American Heart Association and American Diabetes Association’s Know Diabetes by Heart initiative.