Familial Cold Urticaria (FCU)

Contents

Information, Questions & Answers

What is Familial Cold Urticaria?

 

Familial Cold Urticaria (FCU) is an immunologic condition in which the affected person develops several symptoms when they are exposed to cold environments. Approximately 1-4 hours after a cold exposure rash, fever, chills, joint pains, and red eyes develop. Other less common symptoms include extreme thirst, drowsiness, nausea, and headaches. An "attack" often lasts 24-48 hours. The rash is not itchy, but is often described as painful or "burning." FCU greatly affects the daily lives of the people who have it, but the "attacks" are not life threatening. Most people with FCU live very long lives without any other medical problems. However, there are some families with FCU who develop kidney disease late in life that can be severe. 

 

Another name for FCU is FCAS (Familial Cold Auto-inflammatory Syndrome).

FCAS is caused by a gene mutation in the CIAS gene.

There is a continuum of syndromes with a CIAS gene mutation that are related to FCAS, but have different symptoms.

Some of these include NOMIDS and MWS

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What is Urticaria?

 

Urticaria is the medical term for hives. Hives are itchy welts that develop on the skin. A single hive does not last very long in one place, but a case of hives can last for several hours to several days. Most cases of Urticaria occur for a short time and then go away. Some people have hives every day and this is referred to as Chronic Urticaria. Urticaria can have many triggers including medications, foods, stress, and cold. However, many times there is no obvious cause and this is referred to as "idiopathic."

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What is the difference between "Familial Cold Urticaria" and "Acquired Cold Urticaria"?

 

There are two forms of Cold Urticaria, One is "Familial" and the other is "Acquired."

Familial Cold Urticaria (FCU / FCAS) is extremely rare. In fact there initially was thought to be only about 20 families that were known to exist in the whole world, but there are probably many families that live with the condition and do not seek medical attention. Research has found more along with the Internet. Some families have traced the condition to the 1700's. FCU begins very early in life and runs in families without skipping generations. However, rarely there are new cases that develop even when both of your parents do not have it.

Familial cold Urticaria is not actually an accurate description of the condition. The rash is not Urticaria (hives) and is not itchy, but instead is painful. However this is the name that has been used since 1940 when it was first described. It is also been referred to as cold hypersensitivity, cold pathergy, and familial cold polymorphous eruption.  It has also been referenced as Fire and Ice Syndrome.

 

Acquired Cold Urticaria is a more common and is very different from FCU. It is called "acquired" because people develop the condition later in life and it does not seem to run in families. People with this condition do have classic itchy hives. Hives develop within minutes after the person comes in contact with a cold object or cold water. In severe cases a person can go into shock. Antihistamines are used to treat this condition.  There have been a few cases of ACU that have been known to go away after time.  It is not known how people acquire the condition, but some cases have been suspiciously linked to exhaustion and even bee stings, but this has not been medically proven.

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Is there research being done?

 

Currently, there is research being done to find the cause of Familial Cold Urticaria and the CIAS gene mutation gene continuum. If you would like to be part of a research group or would like more information, please contact me.  There are some drug companies, research hospitals, Universities along with the National Institutes of Health doing research.  There is some medications that are being tested that may be helpful.

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What Support is there?

 

I am posting this web page as a means to create a support page with questions and answers regarding Familial Cold Urticaria.

I have also created a MSN Group called "Info Island"

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Why am I doing this?

 

My Father and I were born with Familial Cold Urticaria. I am familiar with the pain and the extra life struggles caused by it.. I am aware of people across the United States that have this condition and related conditions. I want to learn and share about how we all cope with it. I currently live in the Washington DC area and I am willing to coordinate petitioning Congress for more research funding, if needed.

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Is there Treatment?

 

There is no known effective treatment for FCU, but some people have found that warm baths, beverages, and blankets help during an attack. 

 

I had been getting Allergy Shots for other allergies. I am also had been taking prescription medication, which supposedly has residual help, but I was skeptical at the time.  The general medical communities were not as aware of the condition as I have some of the research hospitals and NIH

 

Good health, body and mind can help with a holistic approach to help, but the condition and symptoms will still exist. 

 .

Please share any help you have encountered.

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How about a Support Group?

 

I think a support group will help us to be able to live a better life by sharing experiences and information. For example, I know that this condition causes me to be moody and to withdraw. The residual effect of this is that I have to be stronger emotionally, but have experienced the loss of potential mates, because I would push them away, because I did not want them too close. I also have experience the inverse of meeting people that are insensitive to diversity.

 

I have found out that FCU/FCAS is a disability as defined by the Department of Justice and is covered by the ADA (Americans with Disabilities Act).  I have also found that there are Centers for Independent Living (CILs) that around the country that may be able to help with resources. Also there is the Department of Education IDEA initiative that can help children and college students with the condition.  There were times when I was in primary school that I had homebound teachers and tutors. 

 

If you have this condition or know of someone that does, please contact me to be part of a support group. By bonding together we can be stronger, even if we are across the miles.

 

Places where people with Familial Cold Urticaria are known to live: California, Florida, Georgia, Illinois, Iowa, Nebraska, Tennessee, Virginia, North Carolina, Texas, Florida, Utah, Canada, UK, Japan, Greece, France.  In the states, the migration of families with the condition tends to go south to California, Georgia and Florida. There has been a few families that have been reconnected by tracing their genealogies linking the condition.

 

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Other Sites of Interest:

http://clubs.yahoo.com/clubs/urticaria

For Genealogical Research: Library of Congress National Archives

National Institutes of Health

Congressional Links: ADA - US Senate - US Representatives

Links to Warm Getaways - (Smile;) Bahamas, Caribbean Islands, Mediterranean Places: Spain and Italy

Center for Independent Living in Northern Virginia - ECNV, "Celebrating 25 years of  End Dependence"

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Personal: more background, insight, gripes, and hope.

Growing up with this condition has not been an easy road. It has been painful both physically and emotionally. Physically because of the pain I experience. To attempt to explain the physical pain, at times it can be like bee stings all over the body. Sometimes there are arthritic pains. Sometimes there is a noticeable rash. At times the rash may be present, but there will be no pain. A fever may also be present. occur. Sometimes my hands and feet might swell up with fluids, making it hard to use my hands or to walk. My eyes might be bloodshot.

Emotionally, it has been hard because others do not understand it. Growing up, I have experienced the wickedness that other children can do to one another because of the rash. I have also been discriminated against by teachers who seen my rash or bloodshot eyes. Friends and former girlfriends have tried to fix me by recommending some miracle cure or by referring me to their doctors.

Doctors have taken blood from me ever since I can remember. I have been poked and patch tested. I have had ice cubes placed on my skin. And I have even been put in a freezer a few times.

I have moved a little south to attempt to reduce cold exposure, but I am confronted with air-conditioned buildings in the summer and still struggle in the winter with places that might not keep it warm enough.

I take vitamins and herbs that might help residually. I know that vigorous exercise can help a little too. But these are not cures.

In recent years I have met people with this same condition, and some with other conditions more or less known to others. I have learned about character and hope. In recent years, I have become acquainted with a doctors doing research on this condition and the CIAS gene. This has given me more hope.

I am excited about putting this site together. I hope that it will help us all. I look forward to any feedback, suggestions and comments.

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Contact Information

If you or someone you know has Familial Cold Urticaria and would like more information about being included in a research program, or would like to be part of a support group please email me at islnddrm[AT]ix(dot)netcom(dot)com.



My Web address and My MSN group support site
http://pw1.netcom.com/~islnddrm
MSN Group Cold Urticaria Info Island

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Copyright ISLAND_DREAM.
Last revised: December 14, 2006.