10 signatures reached
To: National Institutes of Health: National Heart, Lung and Blood Institute
We Need A National Standard For Measuring Our Lymphedemic Body Parts
Every clinic that I have been to for my lymphedema has measured my lymphedemic arm, for instance, differently with the tape measure. The therapists start from different places on my arm. The gaps between measurement points are of different lengths at each clinic. The result is that these measurements are not cross-comparable, which is does not help me manage my lymphedema. These differing methods of measurement make it harder for me to know when my lymphedema is subtly worsening or even subtly improving. So I'm urging NIH and NHLBI to establish a national standard for these measurements of lymphedemic body parts so that there can be a consistency in treatment and patient awareness of the progress of the lymphedema.
Thank you
Thank you
Why is this important?
Life is not kind. At any moment, any one of us could be in a situation that leads to the development of lymphedema. Some us are even born with lymphedema. A consistent measurement technique for lymphedema is essential to better track and understand the progress of lymphedema by the patient and by our caregivers.