Have you ever felt like there was something a little different about yourself form some of the others out there?
There is a world out there with a lot of different condition disorders and chronic illness and each of us has a different coping mechanism but mine was blogging and writing which turned into speaking and advocating about a little known genetic disorder called 22q11.2 deletion syndrome, a relatively common, rarely known genetic condition.
The reason it’s important to learn is because it is what Bella and I have.
I wanted to help make everyone outside of the 22q community aware of what 22q is that’s why I started this website in the first place. I am honored that I was a rare gene hero nominee.
I want to thank everyone who nominated me a few years ago for that honor. I was picked out of thousands of people to help spread the awareness and I never realize how just being myself impacted so many people.
Over the years I have mentored advocated and helped so many others. I have learned from the ones I have chatted and connected with over the years just as much as they have learned from me. All of the people who I have come in contact to show that 22q is not so scary it’s rather exciting new way of dealing with life.
Currently my husband and I are in a recovery program and even though I don’t have issues with drugs or addiction the internet was one when I first was diagnosed.
It is easy to get sucked into the 22q world of poor me and not feel normal as the others around us and as fast as I got sucked in I got spit out because my story and my truth is very different from others who have it. I am not only one person with 22q my daughter who is the Bella you all know and see from my post she has 22q as well.
I am so grateful to have her she has pushed my boundaries limits and shown me things about myself as I learn about her issues and things she has going on I too have similar issues. For example Adhd and panic attacks.
That’s why you don’t see me publicly speaking but a few years ago I tackled the fear of public speaking head on and started to share my story. I took a year off to write about it and now I’m ready and able to share my story without my voice shaking or without fear of what anyone else thinks. It’s because of all of the love and support I have had from the tribe of people who have stood by my family and I over the years with our ups and downs.
Sometimes there are only a few milder symptoms like with myself I have a heart murmur but it’s a slight one. I have gastroparesis as well which is a delayed stomach emptying. I was sick a lot as a baby and had seizures as a child which growing up I found out were related to hypocalcemia.
What exactly is 22q?
November is 22q awareness month and I’m so glad you are here on my page reading.22q who need others to understand exactly what it is,
What the symptoms are that come up and the lifestyle we have to take on in managing our symptoms.
Here is some info on what 22q is
This is also the website I have been working on for the past 5 years. Over time and a little bit at a time sometimes I just wanted to close the website but then I run into people who are encouraged so I keep the website running and paying for it. I want everyone who reads Mommies Quiet Place to know what 22q is. It’ is a short term for a genetic disorder called DiGeorge syndrome that is located on the 22 chromosome it affects all aspect of our bodies from head to toes. It is a total body disorder and requires regular check ups with your doctor.
How do you get tested for 22q ?
The way I was tested was with a Fish test
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