Rare Disease Month - Connie's Story - MRN

Rare Disease Month – Connie’s Story

Each year I pause to recognize the honor I have to work as a Home Trial Support Nurse.

The bond that is established & forged while treating patients with a rare disease and on clinical trials is quite special.

As a travel nurse, my role is to plan, plot & travel so that the patient can be treated in their home or community setting. The unique concept of ‘decentralized clinical trials’ does just that.

  • The patient can participate in treatments that are either unavailable in the traditional hospital setting or are only available in busy urban research centers.
  • The burdens for a patient to travel to these urban settings are alleviated.
  • The patients are assigned a travel nurse, so that they can be treated in their home or community setting.

The greatest impact of this one-to-one type of encounter benefits the patients that are being treated. Patients can stay home and experience a feeling of wholeness that would otherwise not always present in a traditional medical setting.

The visit time can vary, between 2–6-hours’. It is during that time that a patient can share various aspects of their life with the nurse. Sharing a passion for a particular hobby, family photos, sitting in a comfortable chair, watching a movie, or even meeting the family pet are just a few examples. These illustrate how a person is not defined or reduced by their diagnosis, rather, as a whole person. This state of being is paramount for a patient being treated for a rare disease.

Some of the things patients have said to me over the years, really demonstrates why this is so important:

“Thank goodness you can come to my home and do all of this”

“I’m too tired and ill to make the trip”

“I feel so much better that you are here; I’m so anxious about starting this trial”

“I feel much more at ease that you are here to support me”

“I am pleasantly surprised at how many different tasks that can be done in the home” (This patient was referring to the Electrocardiogram, blood draws, and centrifuging blood samples.)

Huge thanks to Connie for sharing her story to celebrate Rare Disease Day 2023!

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