Hi everyone, I'm raising funds for treatment of an unknown Illness & Surgery for an incredibly rare condition called Eagles Syndrome.
Around September in 2018 I had discovered a few new things going wrong with my body, that started out as a simple irritation in the throat, and after many doctors visits, Blood tests, and seeing a ENT specialists I was diagnosed with an incredibly rare condition known as Eagles Syndrome.
I started developing other problems ( Issues talking, swallowing food and extremely debilitating pain in the jaw and throat stopping me from eating). I was working at the time and this had put me off a work a few days here and there with work being understanding of the situation.
After these new problems had come about I decided to start investigating other avenues for solutions. Unfortunately we come to today where a year has passed and every month something new had appeared after that diagnosis, problems that seem unrelated to the original. And conflicting information from Doctors and Specialists, I unfortunately could not continue working because the symptoms had gotten so bad that I could not even get out of bed.
To this day my symptoms progressed into: Vision issues & light sensitivity , bathroom difficulties, extreme fatigue and muscular fatigue, Sleeping difficulties, Memory lapse & extreme forgetfulness and inability to take in new information, dizziness and balance issues, the entire left side of my body burns - eyes, tongue, face, skull, mouth, lips, arms, hands, legs & feet. Unfortunately due to the Severity of these symptoms I was let go from my job and forced to quit my other small business I ran as an event photographer.
Adding to all the difficulties of trying to manage these symptoms on a day to day basis, doctors and specialists do not know what's wrong with me and I haven't been prescribed any medication to assist because they aren't sure what to do. I have visited the hospital many times to gain assistance from anyone that I could, only to be discharged because I'm not classed and emergency.
The money that I'm raising here is to primarily fund my travels to Sydney for Eagles Syndrome and the surgery that's involved with removing the bone that grows from the base of the skull penetrating/obscuring into the neck causing an array of issues, I'm going out on a whym for this because no one knows if this is the cause of all my issues or its a mixture of several different things, but the specialist based in Sydney is experienced in cases of Eagles Syndrome, so I'm hoping he can help.
The most frightening part is the urgency of my problems yet no one wants to look at me urgently, I'm put to the last of the list for everything regardless of how quickly all my problems are progressing. I have no idea what tomorrow or the next day will bring, this is truly frightening and a nightmare I wouldn't wish upon anyone.
All money raised that is not spent will be donated to charity.
Thank you for taking the time to read
Eagles Syndrome:
https://rarediseases.info.nih.gov/diseases/9401/eagle-syndrome
Laura Miller is my beneficiary and my partner who helped organise this campaign for me & with me.