Trying to make sense of a cluster of chronic illnesses: Part 1
Most folks who have chronic health issues often struggle with questions such as why me? How did all this happen to me? The problem from a patient perspective is that disease diagnosis and treatment usually happens in "silos" known as separate medical specialties.
If you have a cluster of health issues that cuts across specialties, your various providers may be unable to answer questions about the disease cluster you are living with because they aren't open to or can't see connections between them. But what if there are connections? What implications might that have for your treatment and long-term prognosis?
While most of this blog is devoted to wire and fiber knitting, it is also about my journey coping with a cluster of chronic illnesses and health issues. Today's entry is about my efforts to make sense of the ongoing dysfunction in my body. I want to tell you about a rabbit hole I fell into last night seeking answers on my own.
I have always been amazed by the capacity of the human body to heal and adapt. There is a balance, a harmony, if you will, that is essential to good health. When harmony is disrupted, at first the body tries to tell you what it needs. Eventually a health issue emerges as the body goes into overdrive trying to address the imbalance.
I am living with a number of chronic illnesses: rosacea, retinoschisis, lymphangioleiomyomatosis (LAM), congestive heart failure (brought on by spontaneous coronary artery dissections - SCADs). I've also experienced heart attacks, and pulmonary emboli. Some first showed their face over twenty years ago, while others emerged later. In between, I had no idea what my body was up against trying to maintain the balance of health. Today, my issues are more serious and have been, and continue to be life threatening.
My first attempt at trying to make sense of everything happening to me involved a request to be checked for yet another disease earlier this year. A while back I attempted to get checked for fibromuscular dysplasia (FMD) as recent research links the condition to up to 40% of SCAD cases. FMD can involve the smooth muscle cells in the artery walls becoming dysfunctional.
That caught my attention as it could explain a SCAD and have links to LAM (which is also a problem with smooth muscle cells running amok). But I couldn't get either my cardiologist or my pulmonologist interested. I was utterly dejected and for a while just "turtled", focused on my knitting and tried to forget about everything.
Recently concerns have arisen that the permanent blind spot in my left eye's field of vision (brought on by retinoschisis 20+ years ago) was becoming troublesome again. I was experiencing flashing lights in the area of the blind spot again. This suggests that the laser procedure done back then to build up scar tissue to prevent further separation of my retinal layers may be having problems. I made an appointment to get my eyes checked.
Then last night as I was getting ready for bed, the thought occurred to me: "I wonder are there smooth muscle cells in the retina?" I curled up in my chair with my tablet and promptly fell into a rabbit hole that kept me up half the night.
I posed a series of questions that ultimately led to this one: Are there any common factors involved in retinoschisis, rosacea, LAM, FMD, SCAD and pulmonary emboli? What I pieced together over the course of a night of asking multiple questions and reading what I could of research articles way beyond my pay grade, was that there are:
1. Vascular endothelial growth factor (VEGF) dysfunction, and
2. Pathological angiogenesis
I'll explain how I got to here in the next post, because it will get a little technical. But the short explanation follows.
Pericytes and smooth muscle cells underpin all the vascular structures throughout our bodies. Even large arteries have their own supporting vascular systems.
Angiogenesis is the process that forms new capillaries out of existing blood vessels in the body. These blood vessels are lined with endothelial cells which move and grow in number to allow the new capillaries to form. This underpins the body's ability to heal and repair itself.
Vascular endothelial growth factor (VEGF) is responsible for inducing the movement and growth of endothelial cells. Pericytes are responsible for regulation of this process, telling the endothelial cells where to grow and form, and later on, to stop growing and allow the new blood vessels to strengthen and mature.
When angiogenesis goes wrong, when VEGF malfunctions, things like LAM, SCAD, FMD, rosacea and pulmonary emboli are possible expressions of these problems.
But when was the last time an ophthalmologist, cardiologist, pulmonologist, hematologist, and dermatologist got together to see what their most common disease concerns might have in common?
My next challenge is to find a way to pique the curiosity of people who understands these biological processes better than me. I know how this is likely to sound to medical professionals: what can she know that we don't?
My motivation is very personal as I have what appears on the surface as a tossed salad of health issues. Do I believe that all this stuff is random? Absolutely not. The body is driven to operate in harmony and balance. I don't profess to know anything besides what has revealed itself to me during my fall into the rabbit hole. But I've seen enough to provoke my curiosity.
My concern is will it be enough to provoke theirs?
The next post will list the URLs for the articles I discovered last night, and talk about the series of questions I posed to find them.