Fighting for the Acuity of Sight and MindFriday, July 13, 2012
Shara Bialo, MD, shows that medical providers are not immune to the complications of diabetes. She was recently diagnosed with diabetic retinopathy and in coming to terms with it, she stresses the importance of having an honest internal discussion about maintaining the right mental attitude, including a true acceptance of the disease as the first and most needed step to good disease management.
By: John Parkinson, Clinical Content Coordinator, DiabetesCare.net
Like a lot of teens who become stubborn and question the way things are done, Shara Bialo (pictured on the left here) went through a rebellious stage and chose not to be compliant with her type 1 diabetes. As she recalls, she “meandered” for years through the disease management, and she struggled to come to grips with it, maintaining a sort of denial about it.
And although she didn’t maintain good control, she still went to her regular endocrinologist and ophthalmologist appointments. Right before her appointments however, Bialo became fearful of potentially bad news, especially when going to her eye exams. Yet, her ophthalmologist continued to give her eyes a clean bill of health.
In many ways, Bialo chose to ignore her condition, and she says her mindset would not allow her to come to terms of the reality of her chronic condition—even well into her twenties.
Earlier this year, having had diabetes for 19 years, she had a change of heart and decided to take control of her disease. In April, she transitioned from injections to the pump. This move gave her a feeling of empowerment and a positive outlook about her diabetes and overall future.
Instead of dreading her appointments, she looked forward to them because she want to see how she was progressing with her management.
In June, Bialo went to her ophthalmologist, a retinal specialist, she had been seeing for years for her annual check-up. Bialo was feeling upbeat going into the appointment. Her doctor performed his usual dilated eye exam looking at her blood vessels in the retina. As he moved the ophthalmic equipment away from Bialo, he gave her the news no one ever wants to hear: she had hemorrhages in both her eyes. Bialo had the beginning stages of diabetic retinopathy.
What makes her situation somewhat unique is that Bialo is just beginning her three-year pediatric endocrinology fellowship at Brown University in Providence, R.I. As a physician and long-time diabetes veteran, she is fully aware of the complications she could develop over time. Yet, she was not expecting to go from being a physician talking to patients about their conditions to that of patient herself and being on the receiving end of bad news.
Still, Bialo is not alone in suffering diabetic retinopathy. According to a recent analysis sponsored jointly by the National Eye Institute and Prevent Blindness America, 7.7 million Americans who are 40 and over are estimated to have the disease.
While that statistic is telling there are likely thousands more Americans like Bialo who are younger than 40 and have the disease. The prevalence of diabetic retinopathy has increased 89 percent since 2000, and diabetes is the leading cause of new cases of blindness in adults 20-74 years of age.
The fact that there are no painful symptoms or that vision may not be affected for years can make it more difficult for patients to realize they have diabetic retinopathy. Yet this does not make people immune to the disease as the formation of blood vessels quietly settles into the retinas, eventually blocking acuity.
For Bialo, she has learned from her own experience that acuity is not just related to sight but starts with having the right mindset. She believes it is absolutely essential for people with diabetes to first truly accept their diagnosis so they can begin to make the necessary changes to their lives. Living in denial of diabetes will be consequential.
DiabetesCare.net spoke to Bialo about dealing with the mental and emotional components of diabetes, the special role the diabetes online community played in helping her processing her recent diagnosis, and her proactive drug regimen.
DiabetesCare.net: Can you please tell us about your experience with diabetes?
Bialo: I was diagnosed about a week after I turned nine. As with many kids, my diabetes regimen was mostly successful because of my parents and their work in keeping me under control. In adolescence, I became more independent with my diabetes but also a lot more stubborn, and as a result my A1c started to creep up.
I was going through a rebellious phase with my diabetes. That phase stuck around a little longer than it should have [she laughs].
Actually, I really grappled with diabetes and I was in a bit of denial. It was until the last few years, where I was getting a grip on my control. I was on injections up until this past April. I was very late switching to the pump. My doctor had encouraged me since I was a kid to go on it, but I wasn’t ready to deal with the advertisement that is the pump. I wanted to keep my diabetes a secret from other people, so it took me a long time to realize the true benefit of wearing the pump; I love it now.
Even as an adolescent, although I was more concerned about the here and now, I knew I could still be paying the price for every reading I ignored and every shot I delayed. For every single appointment, whether it was the endocrinologist or the ophthalmologist, I was always nervous that my lack of optimal care in the previous years was going to show its effect.
DiabetesCare.net: You had finally become compliant with your disease management and all of a sudden you go to your eye appointment and the doctor gives you the news that you have diabetic retinopathy. Can you articulate your feelings when you first found out?
Bialo: I reached this point where my A1c was below 7 percent—which was a level I had not seen for as long as I could remember—and I was feeling incredibly optimistic about my future with diabetes. I felt like I had conquered the disease.
I went to my annual retina check-up, which I went to every year. Although I had that same underlining uncertainty I got with all of the appointments I go to, this was the one where I least expected to get the news that I got.
It was always something I was fearful of hearing, and when I did hear it, it was not something I could have prepared myself for. It took me by surprise, and I had one of those moments where time stopped. And as when you receive any shocking news, your mind has to take some time to process it. For 19 years, despite my behavior, I had a clean bill of health.
Being an emotional person, my first reaction was one of a few tears. As a physician myself, I am self-conscious about showing emotion around other physicians, but that day I was the patient.
Although I knew the basics—having studied it in my professional life—all of a sudden, I felt like I knew nothing about what was happening to me. It was a very unsettling feeling. A flurry of questions and concerns stormed in my head.
I am fortunate enough to be working with a fantastic ophthalmologist and he spent a lot of time with me answering questions. People may think having more information about the disease and the what-ifs is scarier; but for me it was the key to being more comfortable with the diagnosis. This was one of the most important things in helping me to process the news.
DiabetesCare.net: Having been diagnosed just a few weeks ago, how are you now in dealing with it? Have you been able to process it and transition into acceptance of it?
Bialo: I feel much stronger now. I had several outlets that had helped me a lot in dealing with the news. One of them was blogging, and another was the support I received from the Diabetes Online Community (DOC). I hadn’t discovered the DOC until the last few months, and with a disease like diabetes, it is nice to know you are not the only one with it. Online relationships are key for people with diabetes, especially for those who are not in close physical proximity to other PWD, because it puts you in instant contact with people who understand your situation.
As part of my coping process, I had thrown out some tweets and some questions to others asking them if they have diabetic retinopathy and what their experiences were like. Many of them sent me direct messages, and tweets saying, ‘I got this a few years ago or I just found out myself, and this is how it is going.’ All of the responses were very hopeful. Some had mentioned how it was good that they caught it early in me and others mentioned how far diabetic retinopathy treatment had come. This really gave me a different perspective and shed a positive light on it.
It is still a sensitive and scary topic for me, but I know that I’m not alone and I have options. Anyone can tell you that, but it is different hearing it from people who have had eye laser surgery or people who have had other retinal procedures. It’s good to hear that the disease has not affected their day-to-day lives.
This online support was a huge way for me to see it differently and turn it around from feeling very sad and hopeless to being able to say to myself, ‘ok, this is the reality. Now what do I have to do next to hold the progression of the disease?’
As I train to become a pediatric endocrinologist, I hope I am able to confer the same comfort to my patients that I felt when talking with people who knew diabetes first-hand.
DiabetesCare.net: Can you talk about the importance of getting into control and some of the transient effects of quickly getting into control?
Bialo: I had asked my doctors about why I was being diagnosed now when I have turned my life around. I knew I could be paying for years of bad control, but it seemed odd that it was happening to me when I was finally doing all the right things.
When I brought this question up with my endocrinologist, ophthalmologist, and optometrist, all three of them said it was common for people with long-standing poor control who finally achieve very tight control to see a transient progression of eye disease.
This is not something people should expect it, but just be aware of the possibility. There is speculation in the medical community that it may have to do with the rate the A1c is lowered, but this needs more investigation.
I then asked them how a progression of retinopathy occurs and they said they don’t entirely know, but when the body is in poor but steady control and quickly changes to a lower set-point, the sudden changes spur damage as cells adjust to a new environment. What they do know is that this phenomenon is transient, so if people continue to be in good control it will help in the long run.
The timing of the diagnosis felt a little cruel, as if I was being punished for doing exactly what I was supposed to be doing.
When this does happen, physicians often worry that people with diabetes might think to themselves, ‘why take care of myself if this is the result?’ Therefore, it is important to stress to people that good control over the long-term really does pay off. I went through the initial period of feeling sorry and angry at myself for handling things the way I did for so long. I had to turn around my thinking and say, ‘with each passing day that I’m in good control, things will ultimately be better.’ That is the biggest difference in my mentality and I’m using it as motivation to get healthier; I can’t change the diagnosis but I can stop it from getting worse.
DiabetesCare.net: Are you taking any newer medicines for the diabetic retinopathy?
Bialo: I had recently switched to the pump a few months before the diagnosis and had gotten into much better control. After I had received the news from the ophthalmologist, I went to my endocrinologist a few days later. I told her the news and asked her, ‘considering this is in a mild, early stage of the disease is there anything I could do besides remaining in good control to help slow the progression of this?’ We talked about some studies that suggested ACE inhibitors may help slow the progression of diabetic retinopathy.
Aside from the risk of low blood pressure, ACE inhibitors are a relatively benign class of drugs. I requested to be put on one. It is important to note that this is not a standard treatment, but there is some evidence in the literature that suggests it helps slow blood vessel formation, mostly by lowering blood pressure. I felt that even though concrete evidence was lacking, ACE inhibitors are safe and I was willing to take one if there was a chance it could help.
DiabetesCare.net: What ACE inhibitor are you on and what is your dosage?
Bialo: I’m taking a very low dose of 2.5 mg of Lisinopil, once per day. If I feel ok on this, I could potentially move up to 5mg per day. The problem with dosing this drug is that there is no standard protocol in place for its use in the treatment of retinopathy.
DiabetesCare.net: Is there testing that can show an ACE inhibitor is helping you?
Bialo: Not on an individual basis, because the true benefit is slowing progression. It would not be possible to measure that in one person, but it would be interesting to see a clinical study comparing the progression of retinopathy with and without the drug.
I chose to take the drug because I want to be proactive and this is a safe way to do so. I wanted to know that I was doing everything that was possible to make me feel a little bit more in control.
DiabetesCare.net: You had said you recently transitioned from injections to the pump. Are there any other lifestyle factors that you are taking into consideration now?
Bialo: Diet modification has been one of the bigger changes for me. Exercise can be difficult in the midst of a hectic work schedule, but it has always been something that I have tried to make time for—both for health reasons and for stress relief.
Mostly it has been outlook and changing my attitude. Whether it be seeing a mental health professional, support groups, or a diabetes educator, people need an outlet to discuss their concerns about diabetes because you really can’t move forward with becoming healthy if you don’t have the emotional strength to do so.
DiabetesCare.net: How often are you scheduled to go to your ophthalmologist now?
Bialo: I used to go once a year to see a retinal specialist and get a fully dilated eye exam. My doctor recommended to follow-up with him in six months. In reading up on the subject, it varies patient to patient. People can be asked to be seen sooner or later depending on their disease progression and other individual circumstances.
DiabetesCare.net: Any advice you want to impart to fellow PWD about eye care?
Bialo: The most important advice is to carry through with an annual eye exam. While people may feel fine, small changes in the eye can occur without any change in vision or outward symptoms.
From what I have learned, the earlier you catch the disease, the better off you are. It is tempting to avoid appointments, but knowing and accepting the diagnosis is the first step in the right direction.
Readers can follow Bialo`s blog here, or follow her on Twitter via: @SharaSays.