Have you ever heard of CVID? Neither had he until February 2016. We actually had, but weren't old enough for it to be at the forefront of our minds (tell you more about that later). For almost two years, Michael Enright had been suffering from rapid unexplained weight loss, fatigue and nutritional malabsorption. He endured every test one could list, including bone marrow biopsies, lymph node biopsies, multiple scans, numerous medical procedures and over 200 various blood draws to find an answer and to check his ever declining nutiritional levels. (click on any of the red links to learn more)
It was after 2 years of probe, scans, punctures, misdiagnoses and more that he was referred to a specialist in San Antonio to repeat some of the very procedures which he had already endured. One of the procedure left him so severely dehydrated it caused him to have muscle contractures and be admitted to the hospital for 3 weeks and placed on TPN for nutrition. It was while in the Methodist Hospital in San Antonio, a hematologist diagnosed him with CVID . It's a disease which most physicians NEVER see in their entire career or during their education, which is why it goes misdiagnosed in a majority of the cases.
Prior to the onset of CVID , he was a healthy man in his mid-40s living a great life and was active and very physically fit. Then out of the blue, it hit. No warnings, no indicators, no concrete explainable symptoms to let a person know they were about to face a battle for which there is no cure. CVID, common variable immunodeficiency syndrome, manifests itself in each of its victims in various ways and often times claims their lives before any true diagnosis can be reached. Many who are diagnosed are done so within the first decade of life or during the 4th or 5th decade (40s and 50s) of life. There is no treatment. There is no cure. There is only the attempted managment of the disease. This includes IVIG therapy once a week (4 small needles placed into his abdomen for up to 2 hours to administer), extremely high doses of nutiritional supplements on a daily basis due to severe malabsorption and medical check-ups monthly, along with a strict gluten-free diet.
Since the diagnosis, Michael has continued to work in a limited capacity only to retain his health insurance as his disability status will not qualify him for Medicare for another year. This activity, which his doctors do not recommend, has taken a toll on his body, as he burns up most of the calories absorbed by his body after a few hours of activity. This disease has caused him to lose close to 70 lbs of muscle within an 18 month span and deterioration of his bones due to nurtitional deficiencies.
After his last hospitalization in October 2016, his girlfriend, Jennifer, suggested to one of his physicians, after doing her own research on the disease, the idea of having him enter a study or be considered for one at the National Institute of Health in Bethesda, Maryland (NIH). It was highly encouraged by his hematologist, gastroenterologist and his primary care physician. After numerous calls, emails, hundreds of pages of medical records and pathology reports, Michael has been considered to go to the NIH to be included in a study for a drug to help manage the symptoms of CVID (since there is no known cure). This study is to find a medical managment treatment to improve the quality of life for those afflicted with this disease. As of today, Michael and Jennifer will be headed to NIH at the end of February 2017, almost one year to the date of his diagnosis, to get the process started to hopefully not only provide Michael some relief but help so many others who are afflicted with this rare disease.
This account has been established to help Michael offset the expenses related to his medical co-pays, nutritional supplements and medical deductible, as well costs related to his travel to medical appointments out-of-town. The study will cover his travel costs to Maryland, but will not cover the costs for his girlfriend who is a constant by his side and assists him in many of his activities of daily living, as well as being his medical advocate and retainer of all information related to his condition, medical procedures and history. A portion of the funds raised will be to assist in supplementing her travel (airline costs) to be by his side in the next step in this hopeful journey for a cure for CVID. They have never asked for anything from others, more than prayers and support, during this journey of frustration, research and hope.
Michael after the day long visits to doctors in San Antonio. 
Here's the later I promised. Remember David "The Bubble Boy ", well he had a severe case of CVID and it claimed his life at a very young age. Michael is fortunate his is not as severe, but the impact on his quality of life could become such if no medical intervention can assist in curbing the symptoms which are impacting his ability to aborb nutrients to sustain life.
Learn more about CVID below:
Why Is the Study of Common Variable Immunodeficiency (CVID) a Priority for NIAID?