News story from Decatur, Alabama about a family with CAPS

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  karend | published 6 months ago | Originally written in English News story from Decatur, Alabama about a family with CAPS

  decaturdaily.com/stories/A-family-out-of-t...
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  • 
    karend published 6 months ago | Originally written in English

    Here is the article from November 20, 2011 Decatur Daily Newspaper in Decatur, Alabama.

    This article is now "subscriber only" on the website, but they emailed a copy to me to share. I have the photo too, but am not sure how I can share that.

    A family out of the cold

    Hartselle mom, 3 sons suffer from rare disease triggered by low temps

    By Deangelo McDaniel

    Trisha Teal and sons Adam, Andrew and Aaron suffer from a genetic inflammatory disease triggered by cold temperatures. She poses for a family portrait with Aaron, left, Andrew and her daughter, Allie, the only sibling who does not have the rare disorder.

    HARTSELLE — For almost a half century, Trisha Teal suffered in silence with the rare disease her family called “the allergy.”

    For all of their school years, her three sons suffered similarly.

    The Teals are four of a rare group — an estimated 300 to 400 people nationwide with the Cryopyrin-Associated Periodic Syndromes. CAPS, as it is known, is a rare inflammatory disease that cold temperatures trigger.

    The Teals are preparing for only their second holiday season in which cold weather will not guide their decisions.

    Until February 2010, the family lived with the undiagnosed symptoms of daily fevers, chills, joint pains, muscle aches, fatigue and red, rashy bumps. “We just called it the allergy,” Aaron Teal said. “We called the disease that because that’s what my mother called it,” Trisha said.

    Dr. Robert Cartwright of Columbus, Ga., has worked with the Teals and is one of the foremost CAPS authorities in the nation. He said the protein cryopyrin is abnormal in people with the disease.

    In cold temperatures, the abnormality causes inflammation in the body and triggers flu-like symptoms, Cartwright said. “The genetic condition runs in families and is so rare that a lot of people, including some doctors, have not heard of it,” he said.

    After graduating from Hartselle High in 2004, Trisha and Ron Teal’s oldest son, Adam, was denied entry into the U.S. Air Force Academy after doctors misdiagnosed him with Acquired Cold Urticaria, a condition caused by exposure to cold that normally affects adults 18 to 25.

    He read countless academic papers until finding a Wall Street Journal article about a man with CAPS. Adam called him in February 2010 and two months later, the Teals received their first injections of Ilaris, a drug Novartis Pharmaceuticals Corp. developed to treat CAPS.
    To control the disease, the Teals get the Ilaris injection bimonthly.

    Cartwright said there is a small risk in taking the drug because it affects the immune system.
    The Teals no longer show symptoms of CAPS, but they still have the disease, and it has haunted the family for five generations.

    Trisha’s mother, the late Nancy Crawford, was first to seek help for the disease in the 1960s. Doctors packed her in ice to trigger its symptoms, but dismissed her with no diagnosis.
    “Through the years, we had discovered that it was associated with coldness,” Trisha said.
    The Teals moved to Hartselle from Texas 12 years ago and brought with them all the habits they had formed to combat CAPS.

    Being prepared meant always having jackets nearby and wearing extra clothes.
    “We’ve always had to make choices,” second son Andrew said. “If we wanted to do something in the cold, we knew there was going to be pain the next day.”

    Ron and Trisha raised their children to do all the things teenagers do. There were always people in worse circumstances, they told their sons. “We could see, we could hear, and we had our limbs,” Trisha said. “We purposely raised them not to let CAPS be hinderous.” That’s one of the reasons Aaron played soccer throughout high school.

    On days after games, he was barely able to walk. “If you love something enough, you do it, and I loved soccer,” Aaron said. “As soon as my games would get over, I would get in a warm place, but nothing kept the symptoms from coming.”

    The Teal brothers said they were never bothered by people calling them abnormal. “Normal is a frame of mind,” Andrew said. Carwright said the Teals have lived with the right attitude and are genetically linked to others with the disease. “I know it’s been painful, but they’ve lived the best way they could,” he said.

    One of the good moments for the family was last Christmas when snow covered the Tennessee Valley. For the first time in their lives, the Teals were able to enjoy a Christmas outside with no worry about body aches to follow. “We don’t have the symptoms anymore,” Trisha said.
  • 
    JacquiAdkins published 6 months ago | Originally written in English

    I received my blood tests today for CAPS and I tested positive for "Heterozygous for the A441V mutation on the CIAS1 Gene." (whatever this means!) My mother and I have been searching for solutions for years as to what is wrong with us. It is very comforting to hear this story. We have heard for years from numerous doctors that there is nothing that they can do for us becuase they didn't know what was wrong. Good to hear this story. :) I hope the medications continue to work for this family.
  • 
    karend published 5 months ago | Originally written in English

    Dear Jacqui,

    I am glad that you have started to get a diagnosis, and hope that soon you will be on helpful medications. There are so many patients that have had the same struggle in their families for generations, and have been told that there was nothing to help them too! It is really hard to imagine that this is even possible, but it is still happening. We are constantly trying to increase awareness about these diseases, and the available treatments. The doctors that are experts are also presenting research at conferences worldwide. Still more work needs to be done on this, and we are here to help.

    Now that you have the gene mutation documented, it should be a bit easier for you to be able to get prescription medication for CAPS, however these are expensive drugs, so it can be a challenge, The good news is that there are patient assistance programs to help with the cost, and we can help direct you to some options. There are also links on our most current website www.nomidalliance.org for these programs under the Current Treatments for CAPS area under the main heading "learn". Contact me anytime if you need some help or have questions!

    Many people say that once they go onto medications, that they "finally know what normal feels like!" I am hoping that soon you will be able to experience a life without constant CAPS symptoms. Not all will be fixed, such as hearing loss or any joint or vision issues, but the good news is that often the rash, headaches, pain, fevers, fatigue, eye redness, and much more will be controlled on mediations.

    Thanks for joining this community, and others.

    Karen
    President-The NOMID Alliance
  • 
    Jennie39939 published 5 months ago | Originally written in English

    This story is touching, thanks for sharing. :)

    ~ Jennifer