I am really thankful that a few more people have reached out and shared their Rare Disease story with me. I am so blessed to have this blog and to be able to share my story with others! Heather agreed to do a Guest Post for my blog and I’m so excited to introduce her to you. Besides our name, she and I have a lot of other things in common too! Most notably Lhermitte-duclos Disease: it’s very rare for me to connect with others who have LDD. If you would like to contact her on you can do so here. Please meet Heather!
I was born with a large head which was the beginning of my medical drama. I had multiple surgeries during my school age years to remove benign tumors. When I was in 10th grade I started getting headaches and double vision. It took the doctors a couple of weeks to figure out what was going on but eventually I was diagnosed with a brain tumor. I had brain surgery within the week. The doctors could not remove all of it because it was wrapped around my brainstem. The preliminary pathology report was brain cancer. After a week we got the final pathology report which was L’Hermitte Duclos. I was also told that I probably had Cowdens Syndrome because of all my surgeries and the fact that I had a large head. My world changed in a big way. I went from having no problems in school to having a learning disability. No one could tell that anything was wrong with me unless I got overly tired or stressed which unfortunately happens a lot in High School. I needed a second brain surgery when I was in College because the headaches and double vision returned. The doctors removed what they could and I continue to get follow up MRI’s. Thankfully things have been stable now for almost 18 years!!!