The story of Vivian
Vivian 60 Years Old I have Familial Hereditary Cold-Induced Urticaria. This very long name is another way of saying, I am literally allergic to the cold. Although, I was born with this disease, and had many outbreaks, I wasn’t diagnosed until I was between 7 and 8 years of age. It was at this time called a cold and moist air allergy. Whenever the temperature drops below 80 degrees, it is too cold and I will have an episode. My face is sometimes disfigured due to the severe swelling which happens all over my body. It can cause anaphylatic shock and I sometimes pass out or faint. It burns like fire, is extremely painful, stings like pins and needles and I itch. I also cannot drink cold beverages or eat cold food. I cannot get in a swimming pool or get caught in the rain. I cannot sweat or be sweated on during intimacy or exercise. I cannot sit on a toilet that is not heated or sit on anything cold. I cannot step out the shower in an unheated room. I cannot lean against the sink to wash dishes or wash vegetables in cold water. Nothing cold can touch my skin. Mammograms, dental work, gynecological and Eye-exams are painful so I avoid them as long as possible. If I have to get an I. V., the one that is used for a person with hypothermia must be used with a heat pack at the point of fluid entry to avoid swelling and possible shock. It is far better for me to just avoid the cold exposures; because the medications prescribed as a precaution causes side effects that add to my misery and are not worth the trouble that it takes to get them or the stress on my physical body. Sadly, avoiding exposure to the cold also means I don’t get to be around people. This too is a huge risk, not having human contact cause me to be stressed and depressed. As a child, I was often teased and laughed at by my siblings, friends and others in the community, I have been in times past, abused verbally, physically, mentally, spiritually and emotionally due to a lack of compassion and a lack of understanding. As a result, my level of trust in people has been diminished. As long as I have suffered with this disease, I haven’t yet learned how to gauge how cold is too cold. By the time that I realize that I am too cold I am already on the verge of passing out. It sometimes takes a day or two for this drowsy-like effect, swelling and pain to wear off. Most people think that it is as simple as dressing more warmly; but If I get too warm I will have the same results as I do getting too cold. It wasn’t until between ages 30 and 50 that I learned the proper clinical name for this condition and that it is a disease. It was also during this time that I learned firsthand the debilitating effects and the hardships of this condition. I lost my home, car, and everything that I owned as a result of having been fired every year. With Georgia being a fire at will state, it would take being fired from more than thirty jobs and filing race and age discrimination suits, before I would learn that Familial Hereditary Cold-Induced Urticaria is the cause. It was suggested that I should therefore apply for disability. I flat out refused! I did not want to be stigmatized. As a last resort, trying to bring an end to my homelessness, I accepted my lot in life and finally gave in and applied for disability December 2016. I learned that mother suffered with the same disease all of her life. She was medicated but never properly diagnosed. Although Urticaria was not the cause of her death, it still saddens me that she died without ever learning the name or the cause of her episodes of suffering.
While there are a lot of people suffering with various types of Urticaria, my hope is to meet one, older than me with the same type as me and who can share how they survive in the areas where I continue to fail. I joined N.O.R.D and the Rare Disease Foundation because I want to help bring awareness. I have come to the place where I have discovered that there is no research, legislation, funding or support for a person like me with an almost un-heard of rare disease. While I do believe that there is someone else like me, my fear is that perhaps they are walking the same path as I did and may be sixty or more years away. I just can’t let this happen since I have come to the place where I realize that I must do something. I am now saving my life and hopefully others too by becoming more vocal and supportive in the efforts to bring greater awareness.