An Invisible Disorder: How someone suffers from Cold Urticaria.

A person with a migraine shows obvious signs of wencing and numbing of the face, and person with a broken bone may have a visible displacement or someone with a cold has a runny nose and altered voice. Their symptoms and suffering are visible. Even though Cold Urticaria has a visible manifestation, the suffering is quite invisible. You cannot feel someone else's pain, their level of burning or itching, the knots in their stomach, the stress of getting a doctor to understand they aren't crazy, convincing those in your circle you do want to be friends, but you really are sick. Cold Urticaria is not a bunch of bumps, itching, anaphylactic reactions and whining, it is so much more.

Everyone with Cold Urticaria experiences similar, but varied symptoms and levels of symptoms. So I can only report from my daughter's perspective.

CU causes the obvious,urticarial wheals and welts (hives/rash), pruritis (itching) and burning. But it also has many other manifestations.

They can also have internal reactions.

Abdominal discomfort – nausea, vomiting and diarrhea are all reactions within the digestive tract to foods and drinks which are cold. As a baby, my daughter could should spit up clear across the room. As she progressed from the bottle to food, she had sporadic vomiting, always around meal time, but we never knew when it would happen.

Respiratory Distress – shortness of breath, difficulty moving air in and or out of the lungs, feeling as though you are being smothered from the inside, having asthma/RSV symptoms, feeling light headed, dizzy. The throat and lungs, react to cold air, cold drinks and frozen delights. Our daughter became anaphylactic three times before we discovered what was wrong. One time involved the consumption of ice cream.

Headaches / Thinking Difficulty – Headaches can occur with and following a reaction. Our daughter had headaches everyday, her thinking was confused and her personality altered prior to being treated for this condition. During times without medication or during the change of medications, our daughter's personality was altered. She became a five year old child once again, exhibiting not tantrums as you would expect, excitability, extreme joy and sudden sadness. She knew these changes were occurring, but she could not control or stop them.

Tiredness and Sleeplessness – A reaction leads to lethargy, tiredness, excessive sleeping, but in most cases, sleep without relief. TLC's night-time sleep disturbances were frequent and dreams were disturbing.  Increased anxiety was a result.

Threshold Variances – My daughter's threshold of tolerance changes by at least ten degrees between colder months and warmer months. She breaks out all year round and has to be medicated daily. However, the breakthrough breakouts rarely occur and she is not nearly as sensitive to the cold in the summer as she is in the winter.

Coexisting Urticarias – People with a physical urticaria have an increased chance of developing a coexisting urticaria. In my daughter's case, she has heat urticaria. Not only is she allergic to the cold, but to heat as well. Even though the best way to stop a reaction is to warm the skin up, keep in mind that the person does not have to be cold to have a reaction. We have to be very careful in warming her body up. Because of another condition, she does not sweat. For this reason she can easily over heat and have a reaction from being too hot.

Isolation - Chronic sufferers which are not able to prevent breakouts find themselves isolated from their neighbors, community and world.  for some temperatures as high as 70 degrees may be too cold.  For others it may be temperatures below 20 degrees.  It all depends on their threshold of tolerance and reactivity.  Depending on where they live, going outside may trigger a reaction.Going near the produce, freezer cases or dairy isle in the grocery store will cause a reaction.  Going to an air conditioned theater, bowling alley, mall, unheated pool, unheated or overly air conditioned church all can cause life threatening reactions.  Children commonly miss a lot of school during the winter months up north and during the whole year down south.  Down south the outdoors is cold in the winter and the indoors is cold during the summer.  Many children have to be homeschooled to keep from being over medicated and reacting on a daily basis.  Churches are often too cold and children and youth leaders don't want to take the necessary precautions of working with special needs children.  Adults and children alike find themselves prisoners to their own homes.  They have few friends and most of them are mostly acquaintances that they only see when they muster up of  wellness to get out once every so often.

People with Chronic Conditions may look healthy, but remember that their suffering isn't always visible. Remember, you can't measure how bad they are based on how they act or look. Trust them, be patient with them and work with them.