Special Needs Spotlight || Victoria

My name is Victoria Judson. I am 19 years old. I was born to Teresa and Russ Judson. We live in Minnesota. The diagnosis that affects me the most is Congenital Insensitivity to Pain with Anhidrosis (CIPA) also known as Hereditary Sensory and Autonomic Neuropathy type IV(HSAN IV/4). I was officially diagnosed on April 4, 2019. We are still coming to grips with the diagnosis even though I was born with it and have had it my whole life. CIPA is a nerve disorder and an extremely rare inherited genetic disorder that makes me unable to feel pain and temperature, unable to sweat, have intellectual disability, and have emotional and behavior challenges. My medical needs have been worsening these last 5 years. Nobody knows why. My parents and I will be going to Mayo Clinic in June for whole exome sequencing so they can try to identify a gene. I have a mutation on the SPG11 gene and it causes autism and intellectual disability–I have both.

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Miggy: Hi Victoria and welcome! I’m so excited to have you here today as I love featuring adults with disabilities to get their first hand perspective. Let’s start at the beginning, do you know how your parents first learned about your diagnosis (diagnoses) and how they first reacted? What do you remember about those early years? Overall how would you categorize your childhood (or do you)? Looking back now, do you have a different view of how those early years have shaped you?

Victoria: My parents always knew something was off. I never cried when I was a baby. They just thought I was a quiet baby. During the early years, I had a lot of meltdowns and I had countless injuries without feeling any pain. My childhood was challenging. My parents didn’t know there was an actual condition that prevents you from feeling pain or being able to sweat. They had to make sure I didn’t get injured. I had to stay inside each summer since I can’t sweat and I overheat easily. Those early years are hard to look back on but I am my own self advocate now and I have my parents’ help.

Miggy: Can you tell me what your family life was like growing up? Did you have great support from your family and siblings? Was there anything you wish they would have done differently?

Victoria:My family life was really supportive. My siblings were somewhat nice to me but they didn’t understand me. I wish they’d paid more attention when I got hurt. They thought I was exaggerating when I told them I couldn’t feel pain and they thought the reason why I couldn’t walk far on hikes was from elevation sickness when it was really because I overheat since I can’t sweat. I am not passing judgement on my parents or family, I am just telling it as how it

Miggy: I know I speak for a lot of special needs moms when I say I worry about my daughter being bullied for her differences. What was life like for you socially growing up? Were you ever bullied? If so, how did you handle it? Do you have any advice for special needs moms in dealing with these sort of situations?

Victoria: I wasn’t very social and I had a hard time picking up on social cues. I was bullied a lot and the school didn’t do anything to help. My advice for special needs moms is to never stop fighting! I agree that accessibility and physical limitations are smaller problems than pity and the way the public sometimes views the disabled community. I am a little social now but it’s hard for me to start a conversation in person. I have autism spectrum disorder level 2 (moderate) so that makes it hard.
Miggy: I’m so sorry to hear you were bullied as a kid–no child should ever have to endure that. How has that changed now that you’re an adult? Do you still fight stigma and unkindness, or has most of that gone away? Is there anything you wish we–your fellow adult members of society–did better to help people with disabilities feel included and valued?

Victoria: The bullying still continues but it’s more passive. Last month, I was wearing my cooling vest at McDonald’s and there was a little boy who wouldn’t stop staring and that hurt my feelings. Whenever I go out in public, we have to bring my medical and cooling equipment and my lightweight wheelchair so we always get stares and rarely questions. My mom used to get stares when I was younger because I would have meltdowns in public and it still happens. I still fight stigma and unkindness. I get tired of explaining everything that I have because it’s a laundry list of diagnoses. I wish that other adult members of society would take a few minutes out of their time to think about what people with special needs deal with on a daily basis and try to think of what they say before they say something. It makes the moment extra worthwhile!

Miggy: As an adult can you tell us how your disability affects your day-to-day life? How has it changed over the years?

Victoria: How CIPA affects my day to day life- I have to be in 65-66 degrees air conditioning year round. I overheat daily. My family can never leave the house without ice. I have a portable freezer, cooler, cooling vest, thermometer, an umbrella, and shades in the car. These are the medical equipment I have to have in order to survive. It’s because I can’t sweat and my autonomic nervous system doesn’t work and it’s worsening all the time. I wear a strap around my glasses and goggles at night because I can scratch and rub my eyes without knowing it since I have no sensation in my eyes and I can’t feel pain. I have to sit on an exercise ball because I sit and sleep in the same position since I can’t feel discomfort or pain. I can only smell really strong smells. I can’t feel hunger or fullness, over the years, I have learned to eat when everyone else eats. I can’t feel thirst. I can’t regulate my body temperature- my normal physical temperature is 96-97.1., etc. I don’t know I have to go to the bathroom until the very last second. I have to use a lightweight wheelchair since I can only walk for short distances. I also have POTS which is when your autonomic nervous system doesn’t work like it’s supposed to. I can’t exercise at all because I can’t sweat and I have exercise intolerance. I get lightheaded and I pass out. My blood pressure and heart rate fluctuate constantly. I sleep 12-15 hours a day. I have hypotonia in my arms so it’s hard for me to lift stuff and I can’t feel the weight of heavy stuff since I can’t feel pain. I have self injured a lot since I was 2 when I get frustrated or mad and it ends in bruises, cuts, bites, black eyes, etc. because I don’t know when to stop since I can’t feel pain. I have a total of 15 diagnoses. I love pressure and I seek out pressure. I don’t like loud noises or big crowds. I also have intellectual disability so I learn things a lot slower. Developmentally, I am half my age so that poses it’s own challenges. I also have emotional and behavior challenges. I used to run away a lot when I was younger and now I’ve been running away a lot more since last year so I will be taking a mood stabilizer. I struggle with frustration, self injurious behavior, and meltdowns on a daily basis.

Miggy: I’ve read about people who can’t feel pain before and I admit that at first I thought, Wow! What a fantastic super power to have! But I’ve also realized that not being able to feel pain, is not the same as not being able to injure yourself. And in fact since pain is usually how our body knows when it’s been injured, this can actually be a very big deal! So for anyone who thinks it would be really great not to feel pain, what would you say to them? What advice would you give to another parent of a child with Hereditary Sensory and Autonomic Neuropathy type IV(HSAN IV/4)?

Victoria: I would say that not feeling pain sucks. I have to be a lot more careful than people who can feel pain and I do daily injury checks. I would also say be thankful for the sensations you do have! I can only feel touch, pressure, and texture. Pain is a gift! Never take sensations or sweating for granted! Not sweating is the most dangerous part of my condition and kills 20% by the age of 3. I stayed inside a lot and I took swimming lessons so those probably saved me when I was younger.

I would say to another parent of a child who’s been diagnosed with HSAN IV to never stop explaining your child’s unique needs and to always search for the right care and treatment for your child! My doctors are specialized in specific areas and have worked with people with rare conditions!
Miggy: Lastly, is there anything else you want people to know about you, your life or disability in general? If you could give any advice to mothers with physically disabled children, what would it be?

Victoria: Despite all of my medical challenges, I try to have a positive attitude! I would like people to know that an interesting fact is that I have an excellent memory for dates and birthdays! I would say to parents of physically disabled children to never give up and they will accomplish things, just at their own pace! An interesting fact is that many people with CIPA also have autism, ADHD, cognitive impairment, decreased ability to smell, and emotional and behavior challenges! 

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Victoria, thank you so much. I always love hearing a first hand perspective of disability–it’s SO important for us special needs parents to read these perspectives as it gives us a little insight into our children that we don’t have, no matter how close we are to them. I appreciate you telling us about your unique medical challenges–I know so many people don’t know about these! It’s important that when you tell someone that your body can’t regulate temperature that they then also hear the breakdown and what that means and what that looks like in real life–lots of ice, constant air conditioning, cooling vests, yes exercize, etc! It’s one thing to hear about a condition, and it’s another to hear what daily life is like with that condition.I’m also going to think about “passive bullying” more and really examine what that can look like in life and how I might do better in that area.  I’m so glad you have a loving and supportive family and that despite all the challenges you maintain a positive attitiude! Victoria, you are amazing! Thank you so much for sharing your life with us. 

As always if you or someone you know would like to particiate in the special needs spotlight please email me at thislittlemiggy at gmail dot com. 

Have a fantastic weekend!
XO, 
Miggy