Chronic Illness Spotlight is a series in which different illnesses are highlighted and a Chronic Illness Warrior that lives with the illness is featured. In the last edition of Chronic Illness Spotlight, we learned about Crohn’s Disease. In today’s edition we will learn about Arnold Chiari Malformation and will feature Zosha Faith.
What is Arnold Chiari Malformation?
According to the Mayo Clinic, Arnold Chiari Malformation is, “a condition in which brain tissue extends into your spinal canal. It occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward.”
This develops as the skull and brain are growing and it isn’t uncommon for a person to be an adult before problems arise. Arnold Chiari Malformation is classified by the more common Type I and Type II as well as the more severe Type III.
Arnold Chiari Malformation, Type I
“In Chiari Malformation Type I, the symptoms typically appear in late childhood and adulthood.” as indicated by Mayo Clinic.
Type I – Common Symptoms
- Severe Headaches that are often made worse by sneezing, coughing or straining.
- Neck pain
- Unsteady gait (problems with balance)
- Poor hand coordination (fine motor skills)
- Numbness and tingling of the hands and feet
- Difficulty swallowing, sometimes accompanied by gagging, choking and vomiting
- Vision problems (blurred or double vision)
- Speech problems, such as hoarseness
Arnold Chiari Malformation, Type II
Arnold Chiari Malformation Type II is typically discovered in an ultrasound during pregnancy, after birth or during infancy.
Type II – Common Symptoms
- Changes in breathing pattern
- Swallowing problems, such as gagging
- Quick downward eye movements
- Weakness in arms
Arnold Chiari Malformation, Type III
Arnold Chiari Malformation, Type III is the most severe form of this disorder and can cause life threatening complications. It is also the more rare for of Chiari Malformation.
Want More Information?
These websites are a great resource for more information.
Meet Zosha Faith
Zosha Faith is a singer, songwriter from Bournemouth, England.
She is also a Youtuber where she shares her life with Chronic Illness.
I have been watching her videos for a couple of months and her positive attitude and desire to advocate for others is inspiring! (I will be linking to her Channel below!)
I want to thank Zosha Faith for sharing her story with us!
Zosha Faith’s Story
Briefly explain your illnesses
Basically my skull is too small for my brain. Because of this my brain is squashed together and causes a lot of symptoms such as nerve damage, memory loss, speech issues, pain, migraines, pressure in the neck and head, fainting, heart issues etc.
How has your illness impacted your life?
It has completely changed my life. Think of an 80 year old and that’s how I feel! I can no longer be the 20 something year old that I am- going out whenever I like, keeping fit, doing hobbies. I need to rest so much more and if I don’t then I am out for the rest of the week. I no longer feel safe alone incase I faint or something happens and I need emergency care.
How long did it take to get diagnosed?
Why do you think it took that long to get a diagnosis?
Because doctors didn’t believe me when I was saying I’m not well. MRI was the only thing that could diagnose it and they wouldn’t do that until I had had all the other tests.
How is your life different now compared to a few years ago?
I have an answer which is a relief and I am having brain surgery to hopefully relieve some of the pressure. But the pain and memory loss and symptoms just get worse. I would love to remember a time when I had no pain and I was a happy healthy soul, but those days are long gone.
What do you do on you bad days to make them better?
See family or just not be alone. I think when I’m alone is when my mind starts ticking. Or if I’m having a bad pain day I wrap up with a blanket and watch YouTube!
How do you handle the isolation you may experience because of your chronic illness?
I think it has made my anxiety a lot worse because now I’m used to not going out. I have lost a lot of friends due to lack of understanding and that does make me sad. But online friends help the isolation and social media too!
What advice would you give someone that is trying to get diagnosed or is has a new diagnosis?
Keep going. You know your body better than anyone so don’t take no for an answer. If you believe that there is something wrong then don’t stop until you have an answer.
Where you can find Zosha Faith!
Read more Chronic Illness Spotlight Articles:
- Chronic Illness Spotlight: Ankylosing Spondylitis
- Chronic Illness Spotlight: Functional Neurological Disorder
- Chronic Illness Spotlight: Familial Adenomatous Polyposis
- Chronic Illness Spotlight: Arnold Chiari Malformation
- Chronic Illness Spotlight: Crohn’s Disease