Sharing My Story: Emily

Sharing My Story: Emily

June 10, 2020

Emily Webb is a mother of four who lives in Taunton, Massachusetts. She was incorrectly diagnosed with type 2 diabetes before learning about maturity-onset diabetes of the young (MODY). This is her story:

After being treated for gestational diabetes and then being diagnosed with type 2 diabetes, I can remember so many hard things.

I have spent thousands of dollars on procedures, testing supplies and medication that may not have been necessary. I have managed weekly appointments with different specialists while working full time and raising small children. I have had to find places at work where I can stick a needle in my leg, explain why my thighs were all bruised to countless people, and miss going out to eat with friends or family.

I spent four pregnancies worrying: was I going to have a stillborn? Would I need a C-section, was I going to have a cord prolapse, would my babies need IVs and have to spent time in the NICU with high blood sugars, would their big bellies get stuck, were they going to have delays from my episodes of low blood sugar? I once read that my children, because of my diagnosis, were 60% more likely to have autism—I have no idea if that is actually true!—but I watched them like a hawk when they were babies. I was told my diabetes would be easier to manage the younger I had children, so I had four children in four years. That has not only impacted my body but my mental health as well. I was told for my health I should not have any more children, so I had a tubalectomy. Now properly diagnosed, I can’t have any more children.

I can remember feeling horrible when no one trusted that I was eating as prescribed and working out five days a week. I went over eight years without eating a banana. I remember knowing that something was off but had no idea how to get answers, make someone listen to me, or how to get help. Society tells you if you have type 2 diabetes it is because you are fat, lazy and eat too much sugar. That is simply untrue, however—for me it did not matter how much sugar I cut out, or how hard I exercised. I genetically had no control over those numbers.

Thinking you are going to have a natural birth with a midwife and ending up being induced and on an insulin pump is hard.

When my sister was getting her masters to become an RD (registered dietitian) she learned about MODY. We both got immediately excited!

Maybe, just maybe, there was an answer.

I asked my doctor about it and he had never heard of MODY. After an increase in metformin and a 40-pound weight loss did nothing to change my A1C, he was willing to do some research with me! After reading the ADA’s Standards of Medical Care in Diabetes with me and learning that some MODY patients did not require treatment, he agreed that I could and should be tested and that he would help navigate insurance approvals. He, however, had no idea who I should see, when, or where I should go to get tested. Finally, after my fourth pregnancy and hours of google searches, I decided I wanted to go see [a new provider]. However, I waited until I was almost back to my pre-pregnancy weight to ensure that my weight was not a factor in her decision to take my MODY claims seriously.

Since getting properly diagnosed I still struggle to find providers who are aware of MODY and willing to learn about it. I have even experienced receiving medical advice from endocrinologists that goes against the MODY research. But I no longer need medication! I no longer have dizzy spells and vomiting episodes and I no longer need as much additional blood work, procedures, screenings, and testing (that to be quite honest really stressed me out!). I eat bananas. I exercise because I like it and it makes me feel good; not because I am desperate to control a number.

Learn about MODY

I have found a community.

I have the knowledge to ensure that my daughter’s pregnancy and delivery story will be different. 

I no longer check my kids’ blood sugars like crazy every time they are sick or worry that simply carrying them in my uterus means they will one day experience obesity. I have been given the opportunity to share my story, empower other families, and educate providers.

I would like to add that although my story has not always been easy, I have been overall lucky to have wonderful providers and overall excellent medical care!

Do you have a story to share about your experience with diabetes? Share it with us here.