McCune-Albright Syndrome

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McCune-Albright Syndrome
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    Disability and Inadequancies

    I was born with a rare bone condition called McCune Albright syndrome which is extremely rare that affects the bones , the skin and the endocrine system. It has taken a toll on my self esteem and how I view myself as a woman . I feel that this disorder has shaped the way that I have felt as a woman who is trying to find her way in the world.. Aside from the fact that this disorder has left me with me with numerous scars and deformities ,and height issues. It has left an indelible mark on how to move forward in life.. I feel as though  I am always looking to my past experiences and not looking to what lies ahead of me.

    Moving forward is a big issue for me. confidence is a big issue for me . feeling inadequate is a big issue for me.. Dating with a disability is extremely hard in this day and age especially when there is so much pressure on being perfect. Perfection is impossible for any woman but especially someone struggling with a permanent disability . I have spent my entire life trying to fit in and be like every other woman, sadly, Im not and will never be. Will I ever be good enough for any man. Can a man find a woman with a disability sexually attractive? I guess the real question is can a man find me sexually attractive? Can a woman like me ever find true love? Is love, romance, and sex too much for someone like me to ask for?

    I have been caught up with being perfect and feeling inadequate when it comes to matters of the heart. The real truth lies in how we feel about ourselves and not getting caught in the fantasy of perfection. We have all struggled with issues of perfection , and how perfection relates to romantic relationships.

    I wish that my life was perfect, and I had the perfect body, but I don’t and this is the body that I was destined to have. I have to work with the body that I was given . I forget that my body can do things that many might take for granted. I can drive a car, I can communicate with people, I can go on a date.. and yes, I would like to believe that my body can perform when it comes to pleasure..

    Most women might feel inadequate based on a number of different factors. My inadequencies relate to how I feel about my own body and how it has affected my life..

    I have realized that just because I have had struggles and feeling of being inadequate, I can still find positive ways to cope with it.

    The number one way for me has been to feel good enough. I have spent a lifetime feeling like I will never be good enough for anyone. Due to my disability I have experienced shyness, insecurities, Unhappiness , and even anger and hostility at times. I have realized that I need to accept the fact that not everyone will accept me and that’s ok. Not every man will want to date me , that’s ok too. I just have to be happy with what I was given and make the best of my life!

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    My Daily Battle with Chronic Pain

    My name is Brittany and I am from and live in Indiana. I was born with a genetic bone disease, FibrousDysplasia. I wasn’t diagnosed until I was 13. I had a tooth pulled and because the swelling never went down I had to get a biopsy, in which the diagnosis followed. My pain started shortly after, all in my head only at the time. By the age of 15, my pain was disabling and was taken put of school. After a bunch of doctors and tests, I was then diagnosed with a brain tumor covering my entire pituitary gland. Surgery was needed immediately. After the initial removal surgery, the pain was worse and I wasn’t able to even move my head. I remember telling my mom I was dying and was not ok. After being sent home a week later to celebrate my 16th birthday, it got even worse. I woke the next day to a bed soaken wet, was all spinal fluid. I was rushed back in and prepped for another surgery, this time to put tissue from my thigh up there to stop the leak. Following that surgery I knew I was ok. I was then diagnosed with McCuneAlbrightSyndrome, another form of my bone disease, along with numerous other diagnoses. To beat it all, I then started having pain in my jaw on top of the headaches that never stopped even after surgery. Three months later I was prepped for my first surgery on my jaw, to shave down the bone. The pain never stopped. I eventually had even more surgeries, including one to remove a bone tumor on my jaw. In 2004, I had got an infection in my jaw following a surgery and it led to me having an emergency surgery. It went horrible and a doctor had ignored protocol and left me with a very low sodium, life threatening. Afterwards, she fixed it in a matter of hours, instead of days that it should of took. This wasn’t known of until I was rushed in one night following episodes of losing control of my entire body. In the er, I was strapped down and sent home with a benadryl reaction. Shortly after was sent home, my endo informed us what had happened afyer surgery so we was sent to a specialist and sat the entire day doing tests. I wasn’t talking or walking on my own at that point and tremors were uncontrollable. By the end of the day I was diagnosed with brain damage, causing 2 conditions(central pontine myelnosis and extra pontine myelnosis) and a movement disorder(chorea). I lost a couple years of my life and endured pain I could never describe. I thankfully can walk and talk normal again but I am left to feel like a child inside and have yet to recover from that. I later was diagnosed with fibromyalgia and TrigeminalNeuralgia. My disease and conditions all do not have a cure so I have continued to have surgeries and will for the rest of my life. The pain has never got better, I suffer 24 7, 365 days a year, always. I have recently lost all my teeth due to my disease and the disfigurement. It has been 3 years and I hope to find help soon so can have my smile back. Everyday is a struggle but everyday is full of hope and joy. I love finding joy in rhe small things. I am blessed to be a co parent of 2 nieces, along with my mother. I now don’t have time to set in bed or to rest daily, they need me. And I think I need them just as much, if not more. I have become an advocate and hope to use my pain and voice to help others see the light and joy everyday and always smiling through it!

    #RareDisease #ChronicPain #ChronicIllness #TrigeminalNeuralgia #McCuneAlbrightSyndrome #FibrousDysplasia

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