By Rachel Basso
What gets you up in the morning? For me it is hope – hope for a better tomorrow. You see, I have suffered from chronic pain, fatigue, and other symptoms since I was about 13 years old. Yet I did not have clear enough symptoms to get a decisive diagnosis of endometriosis until I was 19 years old.
Since being diagnosed with endometriosis, I can say firsthand that hope is what you turn to in the face of adversity. Hope is what keeps you going every day. The hope that someday things will get better, that your health will get better, that your treatment options will get better. Ultimately though, it all comes down to that last hope, because proper treatment is the surest way to improve your quality of life and overall health.
When I first received my diagnosis, I understood that having my period each month was causing my organs and intestines severe damage and putting my long term health in jeopardy. Looking for a solution, I turned to science. The intrauterine device (IUD) was new to women’s health and presented an opportunity to stop women from experiencing a period for extended lengths of time. My doctor identified this new innovation as a potential treatment for my endometriosis. By having an IUD in place I could prevent my periods from occurring for five years, essentially pausing my condition where it was and lowering the severity of chronic pain and other symptoms. This breakthrough device is what allows me to sustain the high quality of life I am currently lucky enough to enjoy. But what happens next?
When my five year solution expires and the IUD has to come out, my disease will continue to progress, causing further damage to my uterus and internal organs. It is a pretty terrifying thought. With current health care treatments, I don’t have very many options. I could use another IUD and continue to pause deterioration, but this also prevents my ability to become pregnant, making it an inadequate solution for my next phase of life. If I want to become a mother, I currently have no choice but to allow my condition free reign and hope for the best in fertility, and hopefully through a pregnancy someday.
I don’t know about you, but “hoping for the best” just isn’t tangible enough for me. I would rather believe in the power of science, research, and innovation. This innate belief that science holds the power to change my future health has led me to my current role as Patient Advocacy Manager at Clara Health. I know that present treatment options will not continue to cut it for my desired quality of life, and millions of other patients around the world face a similar fate. The cornerstone of my role is that it is simply impossible for treatments to reach fruition without brave patients, like you and me, participating in the research process.
I hold out hope that a clinical trial will result in the right treatment for my endometriosis, and the diseases of countless others. I am proud to advocate for a better tomorrow for patients everywhere, by demystifying clinical trials, as well as educating patients and families on the real hope that they hold.
Rachel Basso is a Rhode Island native and a recent graduate from Northeastern University. Presently, she is the Patient Advocacy Manager at Clara Health, where she works to make clinical trials more accessible. Clara is a company founded on the beliefs that science has the power to transform patient lives and that all patients should have access to the most cutting- edge treatments, frequently only available through clinical trials. Rachel joined Clara because as a patient herself, she believes every patient should have their voice heard. In her free time, Rachel is a fitness junkie with a passion for the outdoors. She is constantly smiling and is an aggressive hugger.