Auto Immune/Auto Inflammatory Diseases

To finally find out what diseases i have is bitter sweet. To find out after 4 plus years of fighting, 4 plus years of battling, 4 plus years of going from doctor to doctor to doctor, driving to Philly and Hershey, and Back again all over the Lehigh Valley, After all the gas money and money towards medical bills to finally have answers is bitter sweet. I am glad now that i know what i have but i am also scared for the journey of what is to come an the treatments that i will start to be on for these diseases. 

Auto Immune Disease – I found out not only do i have the beginning stage of Lupus but I also have undifferentiated connective tissue disease. Which is a disease in which the body mistakenly attacks its own tissue making the person sick. It also causes you to have a severe Vitamin D deficiency which i also have. 

Auto Inflammatory Disease – I found out through Genetic Testing that I also have a Disease called Majeed Syndrome which is a rare condition characterized by recurrent  episodes of fever and inflammation in the bones and skin. One of the major features is an inflammatory bone condition known as chronic recurrent multifocal osteomyelitis. Basically what that all means is i have a problem with my bone marrow that is make me sick. 

I do not know what the future holds for me; I do not know how much time i have left, well no one ever does; but what i do know is i will fight and live my best life for as long as possible. I will not waste time from day to day being sad or depressed, i will not let others affect me. I am going to spend the rest of my life living my life to the fullest and living the best life i possibly can. Just because i have these diseases does not mean that that’s all i am. They are a part of me but they do not define me. I am strong and i got this. 

Link to learn more about Majeed Syndrome:

https://ghr.nlm.nih.gov/condition/majeed-syndrome#:~:text=Majeed%20syndrome%20is%20a%20rare,recurrent%20multifocal%20osteomyelitis%20(CRMO).

Link to learn more about Undifferentiated Connective Tissue Disease:

https://www.hss.edu/conditions_undifferentiated-connective-tissue-disease-overview.asp#:~:text=The%20term%20%22undifferentiated%20connective%20tissue,for%20a%20well%2Ddefined%20connective

August 14, 2020

Written by: Amanda Paige Medina

Author: Amanda Paige

I am a 30 year old woman, i have two children and i work full time. I am far from normal, but that is a good thing. I go through everyday challenges with friends, family, loved ones, and work just like any other person would. But at the end of the day I am me and no one is going to change that. Your true happiness is all that matters at the end of day. Life may not be fair but you can sure make it fun!! Living my best life; Life is long so make sure you live every day to the fullest Disclaimer: I am not a doctor or Licensed Psychologist please seek help if you need it.

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