If I had been diagnosed early with Celiac, maybe I wouldn’t have endured the hardships that I did. Maybe I wouldn’t have developed premature ovarian failure. Maybe I wouldn’t have developed refractory celiac disease. Maybe I wouldn’t have to take all the medication that I now take every day. Maybe I wouldn’t have to fear what tomorrow brings.
My journey started years ago with uncertainty and a series of seemingly unrelated physical ailments. For years, I had been suffering from pains in my bones and spasms all over my muscles. Then, the headaches and hot flashes started. The migraines were there all day and night. My stomach was bloated and causing me pain all month long. I had horrible sweats and insomnia every night. I felt I was losing my mind because I couldn’t remember people’s names or even simple conversations at work and at home. To top it all, I lost my menstrual cycle!
The lack of energy and depression almost got the best of me. I lost control of myself. I was slowly being destroyed by this unknown illness. I hated the new me – indeed I no longer recognized myself. I was really terrified that I had cancer since my father and oldest brother lost their battle to cancer. I was so worried that I was going to die and not be able to raise my only child. I prayed to God to let me see my son grow up and that I would be able to teach him the things I know about life. I felt sorry for my family and what they have to endure. I knew that they felt helpless and that bothered me too. I was experiencing all these extreme symptoms and painful times.
I told my physician about all of my symptoms and ended up going to see more physicians. I went from one specialist to another in the hope of figuring things out.
When I had my first endoscopy, I was sent home with medication to relieve heartburn and constipation. I was also told to avoid stressful situations in and outside of work. Did that help me get better? No. My struggle went on for years and I saw so many doctors that I lost count of.
The frustration of not knowing what’s going on and all the physical pain were too much to bear at times. I definitely wasn't making it all up and I knew that something was wrong with my health.
In 2007, I was diagnosed with Premature Ovarian Failure – Primary Ovarian Insufficiency. I felt a sense of relief that I finally had found - what I thought - the disease that was doing all these things to me. At the same time, I was devastated when I learned that the root cause to my condition is unknown and this disease doesn’t have a cure. I cried every day for weeks.
A few months later, I volunteered to be part of a research study at the National Institutes of Health. One of the tests I did there came back positive for Celiac disease. I kept wondering “what’s next?” Then, I had an endoscopy done by a top GI in my area to confirm the celiac diagnosis. Based on the pathology report, I was assured that I didn’t have Celiac disease. My symptoms were attributed to Premature Ovarian Failure by this GI.
Months passed and my health got worse. The amount of physical pain I was enduring was unbearable and I couldn’t function. In 2008, when my genetic testing came back positive for Celiac, my GI at NIH decided to re-test my biopsies from 2007. It was a roller coaster and I didn’t know what to think. Yes, I was misdiagnosed! My GI at NIH, a young fellow officially diagnosed me with Celiac disease. Sadly, I learned that Celiac disease can cause premature ovarian failure. The news made me feel cold and numb.
I believed in myself when my doctors blamed all my health issues on stress. Getting the diagnosis of Celiac disease was such a life changing moment. It changed what I eat, where I go, what I do and it did the same for my family. However, my ordeal didn’t end by being on a gluten free diet. I had to have more tests and endoscopies done, which led to my diagnosis with refractory celiac disease in November of 2009… This is the short version of my story but it gives you a flavor of what I went through.
The mixture of so many difficult emotions I was experiencing were all scorching inside my heart. Although part of me was able to come to terms and accept the disease, the physical and emotional damage I had already experienced had taken their toll on me. I suffered dearly before I received my diagnosis due to the lack of knowledge about the disease in the medical community. The complexity of these emotions and the efforts to come to terms with the disease eventually led me to a different phase of my life.
Putting time and energy into advocacy has helped me come to terms with my whole ordeal. I learned to accept my situation and have since drastically changed my life and how I see life in order to adapt.
I advocated for health care reform because I couldn’t stand the thought that some women don’t even have insurance and these women can’t afford to go from one physician to another and get loads of tests. Some women were denied the care they deserve because of pre-existing conditions. I personally knew that it requires a combination of time, strength, support and money to get diagnosed. It hurts me to find out that young women have been diagnosed with serious health issues that could be preventable. It is not fair and I am a living example of it! It hurts me that the joy of having children has been robbed from some women. It hurts me to know that other women were put on anti-depressants as a treatment because their symptoms weren’t understood. I didn’t want other women to suffer as I did. I couldn’t allow myself to sit on what I knew about my condition and not share it with the public.
I have been advocating for health care reform as an active citizen with the grassroots movement called Organizing for America. We worked tirelessly across the country to gather support for the health care bill that became a law. Our work helped enable citizens to take action and show their support for the reform. Our dedication and hard work was a key driver that helped get the necessary votes to pass the health care reform law. Some of the things that we did were organizing meetings, phone banks and canvasses. We collected declarations from regular citizens that support the reform. We made millions of calls to congress requesting their support for the reform and visited their congressional offices.
On the day that I met President Obama, I had the privilege to hand deliver signatures of the more than 1.1 million people who co-signed health care reform directly to him. It was a joyful experience!
Watch Karima’s meeting with President Obama below:
There are many people out there who haven’t been diagnosed yet, and they are also living with uncertainty and the inherent frustration of not knowing what’s wrong. I learned that advocacy is the key to defeat Celiac disease. This achievement can only be accomplished if patients unite together against it!