Little about myself…
Let me introduce myself my name is Joshua and I live with two chronic diseases. The first is called Noonan’s syndrome I was born with it and diagnosed not long after birth. Noonan’s syndrome is a genetic disorder that prevents normal development in various parts of the body. These include unusual facial characteristics, short stature, heart defects along with other physical and possible developmental delays.
The second disease is called Lymphedema it is a chronic disease that results in a build up of lymph fluid (swelling) that occurs when the lymphatic system is either faulty or damaged. I developed it and was diagnosed with in my lower left leg when I was in my early 20s. I first noticed it after I had twisted my left ankle and the swelling wouldn’t go away.
After few months of doctors visits. I was finally diagnosed when I was sent to see an endocrinologist. I’ve found out I’m one of the fortunate one’s as most go through years even decades before a proper diagnosis. Neither of these diseases have a cure but they can be managed with treatment. I have since found out that some individuals with Noonan’s syndrome develop lymphedema in the lower extremities in their teen’s or early 20s.
After my diagnosis I went through many years of self denial and depression. The result was I developed a life for unhealthy eating and inactivity naturally I gained weight.
After years of mistreating my body I now to live healthier though my continuing yoga practice, clean eating and self MLD I’m taking care of myself & my LE. I now advocate for Lymphedema & Noonan’s syndrome awareness as well a healthy life style.
Why am I writting this blog?
Am i doing to make money from others who suffer with lymphedema. No this is a very personal blog . I’m writing cause i know what it’s like to live with primary lymphedema. I want to stand up and be heard for those with LE like me who can’t.
Specially think there needs to be a male voice standing up for the men with Lymphedema. We men with Lymphedema are under represented in the fight against it. Don’t get wrong i love my Lymphie sisters but when there voice is the only ones being heard it paints a less that complete picture of Lymphedema.
Am I a writer ?
No I’m writer well no professional at lease. I like to think of my self as story teller somewhat. So this isn’t good be a professional looking blog. I’m no medical professional either and unable to answer any medical questions.
Becoming an advocate –
How I became lymphedema dude Joshua and a voice of advocacy for lymphedema suffers. In late 2014 I wanted to connect with other LE patients. Unable to find actual support groups in my area. I decided to take to social media and search for groups I found one a large facebook group it was fine for awhile. Over time I noticed that this group wasn’t the most positive.
I wanted/needed to find a more positive one. I believed there had to be others that wanted not to just live with LE but thrive. One as I was scrolling though posts I came up on a post about a new group starting. The name caught my eye it was called “lymphie strong group” it was started my a wonderful woman who I now consider a friend. I really don’t believe in fate I do how ever think I was supposed to see that post.
I joined this group and quickly found a group who was over whelmingly positive. This wonderful group got me thinking there wasn’t many individuals share publicly their struggle with lymphedema. What individuals I did see where all female. I saw a need for a male voice with the inspiration I got from my group I started my facebook then just know as lymphedema dude. Later I started my ig page as they say the rest is history.
That came from a wonderful person i connected to on social media. Besides doesn’t want to be a superhero. I also truely believe people who deal with chronic illnesses are superheroes. I just happened to be a lymphedema one.
I have a mission and that is to spread Lymphedema & Noonan’s syndrome awareness. So going forward I’ll do just that with this blog.
#lymphedema #chronicillnese #noonanssyndrome