Here at the Service Dog Society one of our goals is to show the world what it’s really like to partner with a Service Dog. We want to showcase what the process is like and all of the ups and downs that go with it. With that in mind we created our Spotlight series. Periodically we will share an interview with a different Service Dog Team who is gracious enough to open up about their experiences and their journey. We hope that you enjoy the stories we share and can gain some new insight into what it’s like to have a Service Dog.
Today’s featured team is Kylene and her Service Dog Leni. Leni is a standard poodle that has been trained to alert Kylene to severe reactions as a result of mast cell disease as well as other related tasks. Kylene is the author of a blog titled Maintenance Required where she talks about her experiences living life with mast cell disease. Kylene was kind enough to talk with us about Leni and share what her experience has been like having a Service Dog.
How did you first learn about a Service Dog as an option for you?
I saw a YouTube video about 2 girls with service dogs for mast cell disease. One has a slightly different form than I do, the other has the same diagnosis. I emailed both asking questions before moving into trying to find a program.
How did you finally make the decision to partner with a Service Dog?
I had gotten to the point where we knew if I treated early, I could sometimes keep my reactions from ending up in anaphylaxis. Only once I started showing symptoms, I was already playing catch up. Emailing the other handlers and looking into scent training as an option helped me realize that a dog could fill in that gap between the reaction starting and my symptoms beginning to show. With her alerts, I get 15-20 minutes warning before my symptoms start. If I begin my emergency meds when I get an alert, I can usually stay ahead of the reaction.
Did you Owner Train or go through a Program?
A Program. Because mast cell disease is a rare disease, there are no programs specifically training dogs to alert to these reactions. After speaking with the other handlers, I approached a service dog program a few hours from where I lived that had done scent training for diabetic alert dogs. It is a small, privately owned company, and the owner/head trainer agreed to give the mast cell alert training a go. There were other tasks the dog would do for me even if the scent training for the mast cell alerts didn’t work, but the fact that we could try to train it was great.
Could you tell us a little more about what mast cell disease is?
Mast cells are produced in the bone marrow and located throughout the body. We need mast cells to survive as they are a part of our immune system. Mast cell diseases occur when there are either too many mast cells produced by the bone marrow and/or they respond inappropriately to a trigger.
In my case, my mast cells are hypersensitive and do not have an “off switch.” This presents as my body having allergy-type reactions ranging from mild (flushing, hives, itching) to severe (full-blown anaphylaxis) that are caused by the mast cells degranulating (releasing their contents) in response to a trigger. Because mast cells are located in every organ, along the nerve pathways, and pretty much everywhere in our bodies, symptoms are systemic (i.e. impacting multiple organ systems) and present differently from patient to patient. Triggers can include normal allergens like food, medications, seasonal changes, etc., but we can also have severe allergy-type symptoms to literally anything (such as digestion, scented products, normal hormonal changes, specific brands of medications, etc.) and sometimes even to absolutely nothing.
While we can anticipate (and hopefully avoid) reactions to known triggers, it is the unknown triggers that are usually the more difficult to manage and control. There is no cure for mast cell disease, and no specific treatment. This means a lot of trial and error with dozens of medications (and often multiple forms of the same medication) and hoping we can find something that will give us some semblance of control over our unpredictable mast cells.
*Author note: To learn more about mast cell diseases please visit The Mastocytosis Society.
Tell us about Leni’s tasks. How does she help you throughout your day?
Her biggest tasks are her alerts. The mast cell alerts give me 15-20 minutes of warning before a severe reaction starts so I can start my emergency meds early. She is also scent trained for hypoglycemia. She retrieves epipens, water from the fridge, my phone, and various other things as needed. She also provides some light mobility with counter balancing and forward momentum.
Do you and Leni do anything for fun?
We’ve done a little agility, she loves to go running with me, squeaky toys are about the best ever, and we have a fenced yard currently full of chipmunks that happen to be her latest obsession.
Have you ever had a public access issue?
Yes, I was at a pet friendly hotel and was told they do not allow dogs in the lobby citing health code regulations and the possibility of someone being allergic as reasons I could not have my SD in the lobby or breakfast area.
I explained that the ADA allowed me to have her with me even in areas pets and other dogs are excluded, and that service dogs are exempt from health code regulations in dining areas. She didn’t seem happy, but relented and didn’t say anything else. I offered to pull up the ADA on my phone so she didn’t have to just take my word for it, but she said it was okay. She was still very friendly and didn’t appear to treat us rudely even after this issue.
At checkout I had Leni with me in the lobby again. It was with a different receptionist and also during breakfast being served. I had no issues then and was not charged a pet fee, so they seemed to at least know something.
It’s a pretty minor issue compared to some things people have had to deal with, but honestly, in the almost 2 years we have been together, this is the worst issue I’ve had.
What have you found to be the hardest part of having a Service Dog?
That I’m automatically labeled as disabled. She makes my invisible illness visible. Most of the time I don’t mind because I have feeding tubes and a port which can be seen and also take away the illusion that I am “healthy,” but it makes it more difficult to fake that everything is okay when I always have a service dog with me.
What have you found to be the best part of having a Service Dog?
She is helping to save my life, but also saving my quality of life. Because of her alerts, I have the confidence to go places and do things knowing she is my early warning system before a reaction. Before having her I was living in constant worry of a random reaction in some random place. I may still react when I’m out, but at least I know it is coming and can be prepared (i.e. pull over to the side of the road if I’m driving).
If you could start over, is there anything you would change or do differently in your service dog journey?
I would have worked on her potty command from day 1. She mostly goes on command at home or familiar places, but she is picky about the spot and even more so when we are traveling. I want her to be able to go on command on any surface. We’re working on it…
Is there anything else you would like people to know?
The world of scent trained dogs for mast cell disease is almost non-existant. There are a few of us, obviously, but when most people have never heard of mast cell disease, it can be tough to find someone will to train for a condition they don’t know. I would love to be a part of raising awareness for service dogs in general, but also as an example of the incredible scope of what dogs can be trained to do even for rare, not well known conditions.
Many thanks to Kylene for being willing to share her story! Stay tuned for our next Spotlight interview to learn more about how Service Dogs make a difference in the lives of individuals with disabilities.