My son and I both suffer with some kind of rare immune deficiency.
If you would like to help, please donate to my son’s GoFundMe campaign, http://www.gofundme.com/helpDavidNoah
Thanks for taking the time to read. Feel free to email directly if you have any questions at teddyleigh <at> gmail.com.
I’ve been diagnosed with the following diseases over the years : *countless bacterial and fungal infections, *positive ANA, * abnormal brain lesions, consistent with MS (but clinically I don’t have MS), *abnormal EEGs, particularly abnormal electrical activity in my temporal lobe, * impaired response to the pneumococcal vaccine, *sinus, bronchitis, pneumonia, *low natural killer cells, *low tcells, *I got the German measles from the vaccine when I was 1 years old, as well as surgeries for ongoing infections in my tonsils, appendix and gallbladder.
My impaired immune deficiency means that I often have negative imaging and bloodwork, but then a culture or a surgeon will find the problem.
For example, I’ve had bacteremia, and in the same blood draw that I cultured positive for both entercoccus and corney bacterium, my wbc was only 6.7 and I had no fever or chills, but I felt like I was dying. I looked so healthy, the doctor who I saw that day thought I just needed to drink some fluids and take a nap. (Nov 1, 2005, St. Joseph’s Hospital, Burbank, California.)
You can just imagine how frustrating this can be for both myself and the physicians who want to help me. I am often left just begging for medical assistance when my test results are negative, because people have a hard time ‘believing me’. It’s an frustrating obstacle course for both of us, and a life threatening one for me.
I am writing this blog in the off chance that someone may read it and have some suggestions or ideas that could help. I know it’s a lot to ask, because I am aware that there are many others who ‘have it worse’. I meet them every week when I’m at the hospital. At the same time, it’s very difficult to live life being so dependent on medical care and the help of others. It’s like being forced to walk through life with a huge concrete slab on your back, a slab so heavy it cuts into your skin and crushes you with pain..so much pain that your friends and anyone who cares about you is forced to help you with its burden.
That’s why I’m trying to find the answer and solve it. I want my son to have a better life.
In the summer of 2012, it was discovered we have a NEMO mutation, and currently Dr. Eric Hanson at the N.I.H. is working to try and figure out if that is indeed the source of our deficiency, or if there is another gene involved. (Any thoughts on this topic are greatly appreciated.) This may or may not be the answer.
Hi I am a mother of two boys Trevor N Peyton who have NEMO, they are 11 and 14….I would like to connect, we live in Florida. email@example.com I hope you get this message,Tonya