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Levelling up mobility aids: meeting my needs over time

Maddie writes about mobility aids she uses which helps her around whilst living with hereditary angioedema.

So, let’s start with a list:

  • doorbell

  • leg warmers

  • crutches

  • Crocs

What do these things have in common? Seemingly nothing, right?

In my experience, these are all mobility aids I have used. Over time, I have moved to more conventional mobility aids, but when I was younger they were pretty creative. My mom came up with a lot of these ideas when I was experiencing symptoms and she didn’t know how to help, so all the credit can go to her.

For context, I was diagnosed with hereditary angioedema (HAE) at the age of six, which is a C1 esterase deficiency that can cause swelling episodes, even potentially life-threatening ones. After having repeated episodes of swelling in my feet throughout my childhood (I was a multi-sport athlete, so that was a frequent occurrence), I developed reflex neurovascular dystrophy (RND). This condition is a nerve problem, and mine presents as constant pain in my feet. While HAE is more serious, in my situation it is much more well-managed. Therefore, a lot of the issues that I had when I was younger were more HAE related, and the primary issues I have now with mobility are RND related.

The first mobility aid I used was Crocs. These shoes were more forgiving than my standard Nike tennis shoes, and I could cheaply get the next size up to allow room for my feet to swell. On days that I would have attacks, I would wear those so that I could still go to school. This was slightly more comfortable, and I used this method for quite a while. Sometimes, just one foot would swell up. Standard crutches were good for this, so I could keep pressure off of the swollen foot to avoid making it worse.

However, what happens when one foot and one hand swells up? What about both feet and both hands? I didn’t have any accessible treatments at this point in my life, so I really had to just suck it up. I missed a lot of school days due to stomach attacks, so I tried to go in as much as possible in the face of extremity swells. I started to use a transport chair from late elementary school to early middle school as needed, which doesn’t have big wheels. The big wheels are for pushing yourself. And me, being independent, really wanted to have that. If I could walk places on my own, why couldn’t I roll there? It took a bit to get a standard manual chair, but my mom definitely started to agree with me when I started to get left places. I was not good at speaking up for myself, so I got left in a classroom, and in the middle of a gym, with no method of getting anywhere at all.

A quick trip to the Penn Hills Service Alliance fixed this. Places with low-cost mobility aids are some of the best places for getting accessibility tools. They are usually donation based, and have a lot of options. I got the perfectly sized manual chair for me, which I still use. It has duct tape on the damaged arm rests, and other than that it works just like new.

So yay! Middle school! I can move by myself! Things are looking up. However, there are a few more hurdles here. I got weightlifting gloves to alleviate damage to my hands from propelling my chair, and prevent attacks as much as possible. And then the RND started to ramp up. I lost my ability to walk for a few months, and then I did some rehab. The walking comes and goes now, but the pain really hasn’t diminished.

The types of days that I would have were in three categories: walking, kinda walking, and not walking. Not walking was the manual wheelchair, and walking was just that: walking. Nike tennis shoes are a staple for walking days, as they help me have more of them. However, the “kind of walking” days were not yet clear; what was I supposed to use then? I did some research and landed on forearm crutches. Just a bit more stability and support, exactly what I needed on the medium days. This combination got me through high school. I ran cross country and track and played soccer when I could, and was still a part of the team when I couldn’t. And then we get to college.

I go to college on a hill. School was always flat, so I didn’t really have to deal with any incline before. And from me trying to go up hills, it was apparent that college wasn’t going to happen without a motor. So about a year before I went to college, we started looking into how to obtain an electric wheelchair. One major flaw that is present in the US insurance evaluations is that they do not take dynamic disability into consideration, or the complexity of the combination of conditions. The day of my mobility evaluation, I was perfectly capable of walking. However, that is just one day. After a lot of insurance denials and mobility evaluations, my mobility aids include the electric wheelchair (deemed “Lightning” by my friends), a manual wheelchair, and forearm crutches. This combination of devices is the best setup for me right now, but who knows what could be next?

Mobility aids, in all their forms and various complexities, have made my life much better. With them, I am much more independent than I ever could have dreamed. Over time, ranging from creative to conventional, the mobility aids I’ve used enrich my life and wellbeing.

Find Maddie's video on mobility aids around the house here:



Instagram @maddie.fitter

HAEA Youth Instagram: HAEA Youth


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