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Disabled and Loved

ID for accessibility: Photo of couple lovingly holding hands.   There is a myth that needs to be broken.  That myth is that people with a disability and chronic illness shouldn’t fall in love or be in a relationship.   I have had chronic health conditions since my childhood. In my teen years my conditions became more severe and multiplied, I developed the rare condition of trigeminal neuralgia (though I would not receive my official diagnosis until almost a decade later).   I remember the fear that struck me, "Who would want to be with someone with so many health conditions and who may not even be able to kiss them?"   From an early age, I was taught I was a burden and undeserving of love. I was a "burden" to my parents, my pastor, my Sunday school teacher, and even to a supposedly loving god.    Once my health conditions started showing up and getting worse, I was then a burden to a future spouse, if I should even date or find someone who wanted t...
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Guest Author of The New Book "Facial Pain: Living Well with Neuropathic Facial Pain"

 Laura is a woman with dark brown hair and green eyes. She is wearing glasses and smiling. Laura holds up a white, dark blue, and teal book. The title of the book is  Facial Pain: Living Well with Neuropathic Facial Pain I was honored to be able to write a chapter for the new book, Facial Pain: Living Well with Neuropathic Facial Pain!  When I decided to share my story in this book I wanted to make sure I shared the message that I learned, and that is, pain and joy can coexist. You can still have a beautiful life even with the pain of TN.  I'm thankful to the wonderful editor of this book Anne Brazer Ciemnecki, The Facial Pain Association (FPA), and The Young Patients Committee (YPC) for this amazing opportunity.  You can buy the book here ! The Facial Pain Association and the Young Patients Committee are an insightful and supportive resource for facial pain patients and their loved ones!

Serena's Story

Serena Huffine smiles with her hand propped  against  her  face. S he is  wearing a  black  blouse,  black  hair  band,  silver hoop  earrings, and  silver round glasses .   Hi, my name is Serena Huffine, and I'm 28 years old and live in the south-eastern United States. I had my first trigeminal neuralgia attack on September 1st of 2021. I was so scared in those first moments of having TN. The pain was so bad that I thought I had a brain tumor. Prior to my first attack, I had never heard of trigeminal neuralgia. I did a lot of research and began my tiresome journey of trying to convince doctors that I had this condition.    I went to the ER probably 10 times total before I received a diagnosis. I was dismissed by at least four medical professionals who claimed that I didn't have TN. However, I knew I did, simply because my symptoms were spot on and I knew I wasn't having migraines. Because I have bilateral TN on ...

Morgan's Story

Morgan stands embraced, between her sister and boyfriend.      My name is Morgan Jones. Here is my story: I used to live in Illinois, a small town. I had everything a girl could want - two wonderful sisters, two wonderful parents, and a smile that lights up the world. All I could do was smile; I had a crazy imagination, and I wanted to be a model and Disney actress because I felt pretty when I smiled. I wasn’t afraid of anything when I was a child, except for bad storms and sleeping alone in the dark. I even had stage fright. When I was little, I would sleep with my mom because I was so scared.   My mom got me into music and the idea of being famous. She taught me how to dance and heard me singing every day in the bedroom. I wanted to help my parents because we were struggling at the time, and I wanted to get them a big house.    When I was around 9, I started losing my smile. My teeth ended up getting bad because I wouldn’t brush them due to the pain ...

Sharing My Journey with Rare Diseases on the "I Am Not My Pain" Podcast

2024 started out with a bang for this medical zebra! T he first week of January, Part One of A Woman’s Journey Living with the “Suicide Disease”, dropped on Spotify and Apple Podcasts , with Part Two dropping the following week. Towards the end of 2023, I had recorded a podcast with the I Am Not My Pain podcast with host Melissa Adams. It was a huge thing for me! And yes, it was indeed, my first ever time being on a podcast. Melissa was wonderful to work with. She provided such a comfortable and safe space to share my rare and emotional journey with Trigeminal Neuralgia and Occipital Neuralgia. It helped me so much to be able to share my story. I had no idea then how it would impact me personally to hear my own story. It was incredibly moving. I even cried listening to my story. It was incredibly validating. I am so glad I leaned into the vulnerability to share my story with my own voice. I am also thankful for the support that I had when considering the idea in the firs...
Today is International Occipital Neuralgia Awareness Day!  What is Occipital Neuralgia (ON)?  “Occipital neuralgia (ON) is a condition in which the occipital nerves, the nerves that run through the scalp, are injured or inflamed. This causes headaches that feel like severe piercing, throbbing or shock-like pain in the upper neck, back of the head or behind the ears.” - The Facial Pain Association.  ON is rare, some numbers suggest 3 people per 100,000 develop it.  There is no cure.  A bit of my story with ON: I was diagnosed last year with Occipital Neuralgia (ON), though my symptoms first showed up in 2020. ON is very painful. My symptoms are electric like shocks and stabs to the back of my neck, head and behind my ears and tip of my ears. I also at times have a continuous burning ache on the back of my head and ears. My neck and back of my head feel like it is in a vice grip. I also have a crawling sensation. The pain level from ON can be very chronic at times...

I May Be Rare, But I Am Not Invisible

  Today is International Trigeminal Neuralgia Awareness Day! I have had TN since I was seventeen (2010) but did not receive my official diagnosis until I was almost twenty-six (2019). Because I understand such a chronic pain condition known amongst medical professionals as “the worst pain known to mankind”, and a condition without a cure, I know how important it is that we spread awareness for TN. I also understand how the lack of having a diagnosis for so long impacts someone, especially as a young patient. That is why I bring awareness, volunteer and continue to share my story. Today may be TN awareness day, but for those of us with TN, every day we are aware of it. Today is for the warriors who are fighting TN, the Survivors who have experienced TN and the Angels who have passed due to Trigeminal Neuralgia being known as the suicide disease. That’s why a cure is needed. So what exactly is Trigeminal Neuralgia (TN)? Here is what TN is in a nutshell from an article I wrote a few y...