A Tale of Two Diagnoses: How Autism and HSAN Shaped My Journey to Understanding

When did you first start experiencing symptoms?

I was born with HSAN, I started experiencing symptoms of autism when I was 2, intellectual disability was in high school as subjects got tougher, and I was 4 when I was diagnosed with a couple of my eye disorders.

How did you go about seeking a diagnosis?

I was diagnosed with autism in first grade as they tested me for it and 5 years ago. I got 2 weeks of extensive testing done at Mayo Clinic in Rochester, MN. I can't remember how it went for going about seeking a diagnosis for all that I have as it's a lot.

How long did it take for you to receive a diagnosis?

19 years for HSAN and Autonomic Nervous System Degeneration, 7 years for Autism, 4 years for Strabismus and Amblyopia, 18 years for Neurotrophic Corneas, 24 years for Christmas tree Cataracts and 14 years for mild intellectual disability.

How did you feel when you received your diagnosis?

I felt relieved with each one but also like in a state of not knowing as there really aren't any treatments or a cure especially for HSAN.

How did you communicate your diagnosis with your loved ones?

My guardians who are my parents were with me for each one, and also help me advocate when I can't advocate for myself.

What treatments have you undergone and how have they impacted you?

Many medicines, enemas, laxatives, abdominal surgeries and surgeries for an implanted port. They've impacted me greatly as I have so many scars and holes in my body, scar tissue, bad veins and it's also affected me mentally.

What is the most difficult part of your treatment, and how do you manage it?

My medical devices and I manage them very carefully to avoid infections and to not have stress.

“God doesn't give the hardest battles to his toughest soldiers; he creates the toughest soldiers through life's hardest battles.”

What has been the most challenging aspect of living with your condition?

Staying at home all the time due to temperature regulation issues and not being involved in social activities but I'm hoping to get involved in social activities this year for adults with disabilities.

How has your daily life and routine been affected by your condition?

I have to change my ostomy bags three times a week. I do daily IV hydration through my smart port and that takes 1.5 hours each day. I go to many doctor appointments that take a half hour or so to go to, [so I] don't have a social life. Emotionally, all of this can be difficult and I live with three lifelong medical devices.

How has your condition affected your mental health and emotional well-being?

Having so many surgeries and medical trauma has definitely affected my mental health and sometimes I'd like to talk to a therapist or someone about my struggles. I try to be positive and have a good sense of humor. My faith in God has helped me through.

What strategies have you found helpful for managing your emotions and thoughts?

Writing bible verses and quotes for different people, doing puzzles, watching Netflix, drawing, coloring and dancing.

How has your diagnosis impacted your relationships with your friends and family?

Some friends have left since receiving my diagnoses, but my true friends have stuck by my side through thick and thin. I don't get to see all of my family as much as I'd like since receiving my diagnoses.

What support systems have been helpful during your health journey?

God, my family, my friends, my wonderful church family and the wonderful supportive Instagram community.

What advice would you give to someone who has recently been diagnosed with your condition?

Keep advocating doctors and never give up hope.

What advice would you give to your past self if you had the opportunity to go back in time?

I would say that God is going to create something new out of your circumstances, has a different purpose for you and will give you strength and perseverance to get you through the upcoming challenges ahead.

How can others be more supportive and understanding of people with your condition?

To learn more about what my conditions are and to not be insensitive.

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Looking for support and resources as a fellow HSAN warrior? Click here: https://hsan1esociety.org/

Want to find out more about Autism? Click here: https://autismsociety.org/

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‍Disclaimer: Please be aware that the content of this patient story is solely the viewpoint of the individual(s) involved and should not be considered as medical advice.