One might think not having to work would be a great blessing but being forced to not work because of chronic illness is quite trying. Chronic illness is a real hardship not only on one’s body but also on one’s spirit and one’s mind. Come along with me on my journey as I work my way through each day struggling along with a very rare disability and chronic illness. As the founder of the Hermits of St. Giles, I try to lead by just being an example of hope and perseverance for others.
The rare illness I was diagnosed with is called Proteus Syndrome. I found on the internet a Proteus Syndrome Foundation. There is one here in the States and one in the UK. I discovered that there is a little over 100 documented cases of Proteus Syndrome worldwide. With 8 billion people in the world just a little over 100 cases sure shocked me. I feel somewhat like a star, but I know now getting funding to help those of us who have it must be quite difficult. If you find it in your heart, please help the Proteus Syndrome Foundation. They call the illness Proteus after the Greek god who was known to change shape in order to avoid capture. I’m sure none of us need to avoid capture, but the illness effects us all in different ways.
This comes directly from the Foundation’s Website:
What is Proteus syndrome?
Proteus syndrome is a rare overgrowth condition. The overgrowth in Proteus syndrome can cause differences in the appearance and growth rate of various body parts. This overgrowth is also typically asymmetric, that is, it does not affect corresponding body parts similarly. The word “Proteus” comes from the name of the ancient Greek god of change; this name was chosen because the overgrowth in Proteus syndrome can cause changes in the shapes of body structures over time.
Proteus syndrome is NOT caused by anything either parent does (or does not) do before or during pregnancy. Proteus syndrome is not caused by any environmental exposures before or during pregnancy. Researchers at NIH have recently learned that Proteus syndrome is caused by a mosaic alteration, or mutation, in a gene called “AKT1.” The NIH research group, led by Dr. Leslie Biesecker, recently published their findings in a journal article in the New England Journal of Medicine. Please refer to the website for further information.
Now, I want to share with you a little bit about the Hermits of St. Giles. The Hermits is an association of disabled men and women who are home bound due to their illness yet still desire to assist the Church in some way. Since we no longer can be actively involved in the Church we are spiritually involved through a ministry of prayer and offering our suffering we endure each day. If you would like to learn more about the Hermits of St. Giles please visit our website on the internet. If you would like to request prayers for a family member or for yourself our email address is
firstname.lastname@example.org. So, I shall leave you for now. Please stay tuned for the next installment.
Love and prayers to you,