Vanessa Devore\u2019s father,\u00a0Octavio Armenta\u00a0was never diagnosed, and neither was her grandfather. Hailing from Guadalajara, Mexico, she represents a legacy of fighters against an unknown disease, as the pioneer in her family who received the first diagnosis.<\/p>\n
Eleven years ago, Vanessa moved to Chicago, Illinois. While pregnant with twins, she began to experience some unusual symptoms. \u201cI started to feel weird,\u201d Vanessa recalls. Her severe fatigue, indigestion, and hot and cold flashes couldn\u2019t merely be attributed to her pregnancy. \u201cSometimes, I had to keep three blankets on the bed to wrap myself in, in case I had to get up in the middle of the night.\u201d Many doctors took note of her symptoms, and diagnosed her with either anxiety or depression, prescribing the appropriate medications. \u201cI knew that\u2019s not what was going on,\u201d says Vanessa. \u201cIt was frustrating, having so many doctors dismissing my symptoms as something that simple.\u201d<\/p>\n
Vanessa\u2019s search for answers came to an end when she visited the Division of Endocrinology at Northwestern. A genetic test confirmed that she suffers from multiple endocrine neoplasia type 1 (MEN-1). It\u2019s a hereditary disorder, characterized by one of 1,300 possible mutations of the MEN-1 gene, which is involved in the production of the protein menin. Menin is responsible for controlling the speed and regularity of cell division, so the absence or malformation of menin can cause tumor growth, often benign, and in the endocrine glands. These tumors can cause hormone irregularities, which can lead to a wide range of symptoms, which can sometimes be regulated. However, MEN-1 has no cure, and is considered a rare disorder, affecting about only 1 in 30,000.<\/span><\/p>\n So far, Vanessa has had two pituitary tumors, lipoma tumors, one pancreatic tumor in the neck of the pancreas, enlarge thymus, and three and a half parathyroid tumors that she had removed three years ago, through lathroscopic surgery. \u201cIt\u2019s livable, but you definitely have to keep up with the disease,\u201d says Vanessa. At one point, she suffered from hypocalcemia, or dangerously low calcium levels in her blood, which lead to tetanus. \u201cIt was scary, because my body started shutting down, I couldn\u2019t move anything. Luckily my husband was there, and could take me to the doctor.\u201d<\/p>\n What makes living with MEN-1 so difficult is that most of the symptoms aren\u2019t surface level. Vanessa\u2019s struggles with mood swings, indigestion, fatigue, and feverishness come in waves of intensity. Symptoms often worsen around times of menstruation, and can come on very quickly. \u201cPeople look at me and think, oh, you look great. But there\u2019s a lot going on there that they don\u2019t understand, or care about,\u201d says Vanessa. These kinds of personal, internal symptoms may not be easily recognized by an outsider. However, MEN-1 patients deserve moral consideration, and understanding. \u201cJust because you can\u2019t see my suffering doesn\u2019t mean it isn\u2019t happening,\u201d reflects Vanessa. \u201cI wish people wouldn\u2019t be so quick to assume I\u2019m fine, or pin my symptoms on mental illness.\u201d<\/p>\n Vanessa is continuing her legacy of fighters with her three children: Dereck, age ten, and her five-year-old twins, Isabella and Matthew. She had all three of them tested for MEN-1, and Dereck and Isabella came up positive. \u201cIt\u2019s painful to know that you passed this on to your kids,\u201d says Vanessa. \u201cEvery time I take them in for an MRI or blood test, it hurts my heart.\u201d Dereck has challenges of his own; in his pituitary gland, a benign tumor produced too much prolactin, causing his testosterone levels to skyrocket, and an early puberty onset.<\/p>\n Dereck started taking Cabergoline, and his testosterone and prolactin\u00a0levels have returned to normalcy, but the results are not perfect. \u201cWhen he takes the medication, he can\u2019t sleep very well, and doesn\u2019t have much of an appetite,\u201d says Vanessa. \u201cHe still has a lot of mood swings, like me. We relate to each other, and I understand him.\u201d Her five-year-old daughter, Isabella, was also diagnosed with MEN-1. As of now, she has no identified tumors, but Vanessa can tell that her little girl is changing. \u201cShe used to be so sweet, and always calm, but she\u2019s starting to have these mood swings. That\u2019s something different.\u201d<\/p>\n Vanessa has a keen awareness for the ways in which MEN-1 affects her and her children, crediting her family history, personal experience, and support from others affected by MEN-1. She joined the American Multiple Endocrine Neoplasia (AMEN) Support group, which she found through Facebook. \u201cEverybody has been so supportive, like a family,\u201d says Vanessa. The AMEN Support group cohosts free, annual educational seminars with the Mayo-Clinic, in Rochester, Minnesota. \u201cThey had one in Chicago for the first time last March at Northwestern Memorial Hospital,\u201d says Vanessa. \u201cThey bring the team of doctors, give you information, and you can ask questions, and get to know each other personally in the community.\u201d<\/p>\n Patient communities like this are vital in compiling information, garnering support for research, and comparing similar personal experiences with the disease. \u201cIt\u2019s helped a lot, to be able to reach out to others who live with this,\u201d says Vanessa. \u201cOthers have stressed the importance of wearing a Medical Alert Bracelet, and carrying around information about MEN-1.\u201d Within these communities, patients like Vanessa learn how to better manage the day-to-day struggles of their disease, through others\u2019 real life experiences.<\/p>\n Vanessa is happily employed and married, with three beautiful children, and a sense of optimism; she doesn\u2019t let MEN-1 hold her back. However, she struggles with the financial burden of high insurance rates for her and her family. \u201cIt\u2019s so expensive, we pay more monthly for our insurance than for our mortgage,\u201d says Vanessa. However, perhaps the greatest difficulty is that her physical and emotional struggles are often disregarded by others, as the symptoms for MEN-1 are less obvious from the outside. \u201cIt\u2019s livable, but it\u2019s hard, because a lot of people don\u2019t understand,\u201d says Vanessa. \u201cI have to encourage my children. I tell them, we can do it. We are special. We are warriors.\u201d Vanessa Devore and her family will continue to fight for awareness and support toward multiple endocrine neoplasia type-1.<\/p>\n","protected":false},"excerpt":{"rendered":" Vanessa Devore\u2019s father,\u00a0Octavio Armenta\u00a0was never diagnosed, and neither was her grandfather. Hailing from Guadalajara, Mexico, she represents a legacy of fighters against an unknown disease, as the pioneer in her … <\/p>\n