Life Changing Surgery for an Invisible Illness
Hi, my name is Juanita Millard and I am 37 years old. I have a rare medical condition called Superior Semi Circular Dehiscence (SSCD). Say What??I Know! That was the same reaction I had when I was first diagnosed in 2015.
Superior Semi Circular Dehiscence is a very rare medical condition of the inner ear. The symptoms are caused by a thinning or complete absence of the part of the temporal bone overlying the superior semi-circular canal of the vestibular system. There is evidence that this rare defect, or susceptibility, is congenital and was only first described in 1998 by Lloyd B. Minor of Johns Hopkins University in Baltimore, USA. Only 1 in 500,000 people have it, and it can be debilitating.
I began to notice hearing my heartbeat constantly pounding in my right ear. I also then started hearing the internal sounds of my own body (autophony). Every step I take sounds like a drum in my head. This throbbing, pulsating noise keeps me awake at night. My body is constantly fatigued and this effects my concentration and short-term memory. The pressure in my head feels like a balloon that just I want to pop, in order to relieve the pressure. The slightest bit of physical activity or emotional stress instantly sends me over the top. I can't escape the symptoms and it continuously brings me down. It effects my daily life, as the symptoms are consistently there, 24/7.
It requires your brain to work incredibly hard to maintain basic equilibrium, and there are days when you feel absolutely helpless. How do you explain this to your spouse, your family, your co-workers, and your employer! People tend to look at you, and to them you look perfectly healthy, but they cannot imagine what goes on in your head.
As this is a relatively new and rare, diagnosed condition, there are not many doctors who are able to assist with or treat it. After having been diagnosed with Superior Semi-Circular Dehiscence, I was referred to the only doctor in South Africa who had knowledge of this condition, and was willing to do a surgical procedure to try and rectify the problem. I went into theatre on June 07, 2016, after having suffered with this condition for over 6 years.
This was it! The opportunity that I had been waiting for. I was finally getting relief of all the debilitating symptoms and reclaiming my life! I could start a new chapter with my family, one that I could enjoy to the full.
Sadly this did not happen and my happiness was short lived! During my recovery period, all the symptoms returned. In fact I even gained a few additional ones, like severe dizziness and disequilibrium. I had also ruptured my ear drum and fluid leaking out my ear. The infamous heart pounding in my ear was back!
There is unfortunately nothing more that we can do here in South Africa, as the doctor does not want to attempt a revision surgery. So what happens now? Do I simply make peace with and accept the fact that this is how my life will be? Do I give up all hope, and pray just to be able to make it through the day?
It was on September 25, 2018 that I made contact with UCLA Hospital, USA to see whether the surgeons there would be willing to review my case and would be able and prepared to do a revision surgery. I finally received their feedback! The surgeons are prepared to do a revision surgery as well as treatment for the left side, as that ear is also enroute for the same fate as the right. This was the miracle I had been praying for! Two of the best surgeons with a vast amount of experience relating to this condition, had agreed.
However, yet another road block! As most things in life come at a cost, this is no exception. We do not have the funds to cover a medical procedure in excess of $100,000.00 USD.My Medical Aid will not make a contribution, and I have exhausted all other options in trying to acquire the funds needed!
So today I am pleading with you, to find it in your heart to make a donation of any size. Any contribution towards this procedure will be life changing. Anything will be greatly appreciated and will go a long way in making this dream come true!
For those who asked for banking details who do not wish to pay in US Dollar Currency please feel free to make payment in the following bank details:
Account Holder: Juanita Millard
Account Type: FNB Premier Cheque Account
Account Number: 62779224296
Branch Code: 250655
Please use ref: Donation