Cool Handwashing thing!

I was in a restaurant the other night when I went to the bathroom to wash my hands. The restaurant only had one restroom and it was full. However, there was this strange looking counter that had two holes in it and a sign overhead saying Handwasher. I was very confused as I had never seen such a contraption. It said to put your hands in the little holes and it immediately turned-on water with soap. It was very cool and only took about 10 seconds.

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I started thinking… wouldn’t this be great for hospitals and doctors offices? And schools? People would be more likely to wash their hands with something so unique. It also takes less time and still accomplishes the same goal. I think it would be very easy for children to use because they don’t have to do any thing. The parents don’t have to worry about them actually washing their hands because there is nothing for them to do! It takes away anyone having to touch soap dispensers or water handles. It is very innovative and unique at the same time!

Radio Interview

I was so excited to be interviewed for a radio show called Speak up and Stay Alive by Pat Rullo. She asked me questions about what it is like to be a teen patient and about why I made my video. We talked about what makes a good patient experience, and I got to talk about some of the positives of having a chronic disease too. Please listen and let me know what you think! My part starts around 15 mins in.

Shared Decision Making Guest Blog

Shared Decision Making Guest Blog

I was asked to be a guest blogger on the Informed Medical Decisions Foundation blog for Shared Medical Decision Making. They asked me to respond to some questions which they posted here and I am posting here also.

1. What prompted you to become engaged in your health care? Tell us your “ah ha” story.

Even though I am only 15, I have a lot of healthcare experience. I was diagnosed with a rare autoimmune disease called Juvenile Dermatomyositis at the age of 11. Over the years, we have faced many decisions that had to be made about my care. In January of this year, I was hospitalized for meningitis that I developed after getting an IV treatment.  After four days of getting little sleep due to a horrific headache and high dose steroids, I was frustrated by two main things. First, the different med students, residents, attendings, and specialists all came to see me at different times and they started waking me up at 6am and came at staggered intervals all morning which kept me from resting. I believe sleep is critical to healing. Secondly, one of my doctors kept taking my mom into the hall to talk about my care without talking to me first. Even if I can’t make the decision as a 15 year old, I should at least have a say in the discussion. I made a video that got a lot of attention about patient experience. It can be found here.

2. Can you recall a time when you pushed back or challenged your doctor to get the care you needed? What surprised you about that experience?

Last fall, I was recovering from a really rough few months and I had been doing school from home as a hospital/homebound student. One of my doctors said I should go back to school because it would be better socially. I explained that I was exhausted and feel worse when I go to school which means that I don’t feel well enough to do things that I enjoy like riding horses. By the time I get to the barn, I don’t have any energy or I don’t feel well enough to ride. If I do homebound school, I can focus on school but also have some energy left for fun activities. Regardless, I get to see my friends outside of school so going to school isn’t required for social needs. This was surprising to me because it seems that healthcare is not completely focused on the patient’s health and their perferences.

Another example involves the nursing staff. I do not like to get the blood drawn from the IV site when they come to start my IV because I think it hurts worse than getting two sticks that are fast. Also, the blood drawn from my IV is often clotted and has to be redrawn which is usually done at 5am in the morning! When I told one nurse that I didn’t want her to draw the labs, she was very upset and kept trying to assure me that she could get it and that it wouldn’t clot. Later, I heard her in the hall telling my regular nurse that I had REFUSED to let her draw the blood from the IV. I was very surprised because it seemed like a reasonable request that got them better blood samples for the tests they were running and was less pain for me.

3. Some patients are hesitant to become involved in the decision making process. What would you say to empower them to take an active role?

You are the only one who knows your body and your preferences. The only way that you will get the treatment that you need is if you speak up and share your concerns or preferences. If your doctor isn’t willing to work with you, don’t feel like you have to stay. You can always change doctors to get the care you need.

4. Some providers think patients don’t want to be involved in the decision making process. What would you say to change their minds?  

You should always at least ask the patient if they have any questions or concerns. You can’t just assume that people don’t want to have a say in their treatment. I think most of the time people want to have input but are scared or don’t think they can.

5. In an ideal world, what does patient-centered care look like?

In an ideal world, care would be completely focused on the patient, and their needs, wants, and health. Also, when there are financial differences in treatment options, that should be explained. In an ideal world, healthcare would really not look much like it does now. Progress is being made, but it really isn’t close. Many things can be done at home instead of in the hospital, and when you are in the hospital, it should be focused on what is good for the patient and not so much around what is good for the doctor.

I would love to hear your thoughts on shared decision making as well as comments on my thoughts above. Also, please visit the Shared Decision Making blog to read other patient stories such as Ra’Shaun Glass, Jeff Hansen, Christie Aschwanden, as well as other great topics.

Stanford MedX Rare Disease Panel

On February 23rd, I was a guest on the Stanford MedX Rare Disease panel. It was my first google hangout, and it was fun. Other than having a technical issue that prevented me from having a cool name listing like the other panelists, I thought it went well. Because i was under 18, they had my mom participate in the background.

We discussed what it is like to have a rare disease and the challenges with explaining it to others. We talked about the importance of research and connecting with other patients online. It was great to hear other share their stories. There were other patients, a caregiver, a doctor, and a journalist on there as well, and it seemed like we had some common stories to share.

There are over 6,000 rare diseases, and together they affect about 30 million people in the US. When you put them all together, they are not that uncommon, but each individual disease has less than 200,000 people with it in the US. That is the definition of a rare disease. has a lot of information about my rare disease, Juvenile Dermatomyositis. If you are interested, check it out. The more people learn about rare diseases, the more we can have faster diagnoses and better treatments. Cure JM also has a patient community that is great at helping families get information they need.

Another resource we discussed was and the Spoon Theory. If you haven’t heard of it, it is a great explanation of what it is like to have a chronic disease that causes fatigue. Many people don’t understand what it is like to look well on the outside but to feel badly and suffer from fatigue.

Check out the video and let me know what you think!