Living with a real but rare skin condition

Burden of Chronic Idiopathic Urticaria (CIU) (CNW Group/Novartis Pharmaceuticals Canada Inc.)

In this guest blog, Kayla Creighton shares her experiences living with chronic pain

I have suffered with chronic idiopathic urticaria since the age of six. Also known as CIU, this condition is defined as hives, wheals, swelling and itching that lasts longer than six weeks and with no apparent cause. What the definition doesn’t identify is the intense pain and suffering, both physical and emotional, that this disease causes patients like me.

Since I was diagnosed, all aspects of my life have been impacted. For example, this past January, I had to take medical leave from university. My personal and social lives have also been affected as my friendships have suffered because I was limited in where I could go and what I could do. There is also a strain on my mental health, as I am constantly living in fear of my throat swelling or my body becoming damaged from strong medications. Understandably, I’ve suffered from anxiety and depression because of this. CIU can also be financially stressful as chronic disease medications can be expensive.Kayla-Headshot-resized

Over the years, I’ve trained my mind and body to be prepared for the worst, as that is what I wake up to everyday: the worst pain, the worst swelling and the worst itch you can ever imagine.

I feel a responsibility to patients who are suffering with this debilitating skin disease but are not ready to share their story. My hope is that by sharing the story of my suffering, CIU will become a better-known chronic disease and more people with the condition will come out of the shadows to seek support.

I have hopes of starting a patient support group in Atlantic Canada in the coming year. This was inspired by a patient forum I attended in Switzerland that gave CIU sufferers the opportunity to meet one another and share their stories. This patient forum gave me hope in knowing I’m not alone in the battle against this real and challenging disease. I want to share this sense hope with CIU patients in my local community and other parts of the Maritimes.

If you know someone with CIU:
(1) Be supportive! We are living with a rare but very real disease that causes daily discomfort.

(2) Do your research. There are great resources online for information on CIU, including CIU2-resized

If you are a patient:

  • Please reach out! Seek proper medical and psychological help if you are in pain.
  • Connect with other CIU patients who understand what you are going through. A great resource, if you are not comfortable meeting in person, is through an online forum like a Facebook group. Check out the one I recently started here.

This story was originally published in Halifax Magazine.

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