Help! - Young woman seeks assistance with life-threatening condition
Published:Wednesday | October 17, 2018 | 12:00 AMTamara Bailey/Gleaner Writer
MANDEVILLE, Manchester:
With just a few months left to complete her master's degree and continue work in the field of molecular biology, 32-year-old Raeann Simmonds continues to stare down the very dark barrel of Idiopathic Intracranial Hypertension (IIH), a condition that is threatening to paralyse her dreams and make life even more unbearable.
IIH is a condition characterised by increased pressure in and around the brain and spinal cord, which is due to the overproduction of cerebral spinal fluid which causes swelling and damage to surrounding structures, such as the optic nerve. Obstruction of the optic nerve causes blurred vision and visual loss.
This disorder can be treated with medication. However, in cases where this mode of treatment becomes insufficient, a device called a shunt is implanted. A shunt relieves pressure on the brain by draining the excess cerebral spinal fluid from the brain into the abdomen where it is absorbed.
In 2012, a year after her diagnosis, Simmonds had a lumbar-peritoneal shunt implanted. But her shunt no longer works as it should.
"Having a shunt that does not function properly has created many limitations and discomfort for me. For one, the tinnitus (ringing in my ear) has caused me countless sleepless night and as a result reduces my daily efficiency. My vision is sometimes blurred or lost and my eyes can become very sensitive to light. Headaches can be continuous, lasting for days at a time. Although I am on medication for the symptoms, it is something not as effective as I would hope and the side effects can be unbearable. The major side effects for me is the feeling of 'pins and needles' in my finger tips and under my feet, which can get to the point that walking, and movement of my finger becomes very painful," Simmonds told The Gleaner.
She continued: "... Life with IIH has been at times challenging, uncomfortable and frustrating. IIH doesn't present itself outward like most diseases/disorders and many persons have little knowledge about it. As such, saying you have a headache or expressing other symptoms, though debilitating to persons with the disorder, it is not fully understood by many. It can sometimes feel like you suffer in silence even when speaking."
... Simmonds almost lost her vision
Simmonds said she has had it so bad with her condition once, that she really thought the end of her life was in reach.
"...I started experiencing disorientation for the first time and I almost permanently lost my vision. My vision got to the point that I couldn't differentiate colours and the doctors didn't think I would regain full sight. I had many moments I couldn't tell who I was or where I was, and around that same point in hospital, I got meningitis as a complication of surgery and spent days in emergency care clinging to life. It was a scary time for me," she related.
Now Simmonds requires two other surgeries as the lumbar peritoneal shunt she had implanted is tangled and its valve is lodged in her abdomen, resulting in severe pain and reoccurring symptoms.
"The two surgeries are required to rectify this problem: removal of the lumbar peritoneal shunt and the implantation of a new programmable ventriculoperitoneal shunt. The total cost of these surgeries are J$4,800,175, which amounts to approximately US$36,000," said Simmonds.
She told The Gleaner that even with a need to find millions of dollars for her surgeries while battling the daily effects of this condition, she has no choice but to remain positive that things will work out.
"My faith in God, support of family and friends in every aspect of this journey has been my strength. I try to keep a positive attitude and persevering spirit knowing that there are greater and wonderful days ahead. I put effort into enjoying each day for what it is; accepting the bad days and cherishing the good ones. I take courage in those who went before me and shone through the storm. I look forward to the day where I can help someone else with the story of my journey and become an avenue of awareness and change in the world."
To contact Raeann Simmonds: Email: raeannsimmonds@gmail.com or Tel: 876-573-4863. Donations can be made at: https://www.gofundme.com/gift-for-rae-surgery or by direct deposit at Raeann Keisha Simmonds - Give for Rae (Special account) serviced at National Commercial Bank, Mandeville, account number: 504725502.