A 17-year-old Gleneagle girl described her experience with abdominal cutaneous nerve entrapment syndrome as like being stabbed with a knife which is dragged into her groin and lower abdomen.
The condition is associated with chronic abdominal wall pain due to nerves being trapped in the front abdomen.
Kyla Grimmond has suffered from the commonly overlooked disease for almost a year before it was clearly diagnosed in November.
“It is really quite horrible pain, absolutely excruciating,” she said.
“I am exhausted by the end of the day because of the pain and the medication is really heavy stuff. I have dropped out of school.”
Ms Grimmond reflected on her ordeal prior to her diagnosis, consulting with more than 20 doctors before receiving her answer.
“I got told I was trying to ditch school and it was all in my head,” she said.
“Patience is the key, it takes so long to get it diagnosed. You need to be persistent and tell the doctors that it is not in your head, listen to your body and what it is trying to say.”
Following a desperate search for treatment, Ms Grimmond finally found a specialist in Western Australia, Dr Krishna Boddu, who was able to provide nerve blocking injections.
After receiving support through locally funded gofundme page donations and community contributions, Ms Grimmond is seriously considering moving to Perth to continue treatment.
The procedure often takes multiple attempts before it can cause pain relief.
“You are awake the whole time and they inject water and steroids into the scar tissue and they need to get it in the right spot, if it misses it might not work at all,” Ms Grimmond said.
“If I go in again, and find the right spot it could work from six hours to 3 months, it could take one injection or 20, it is really quite invasive.”
The experience has inspired Ms Grimmond to seek an alternative pathway to medicine once she is able to return to her studies.
She is looking to do nursing in TAFE and from there complete a registered nursing course at university to have a “good head start” toward becoming a doctor.
“I look at Dr Krishna Boddu who has inspired me while he was in theatre… he knew I wanted to be doctor and he was giving me tips,” she said.
“I’m thinking of doing gynaecology and obstetrics, so delivering babies.”
Well on the path to having her life getting back on track, Ms Grimmond said she was eternally grateful to everyone who donated to a Beaudesert garage sale, Harvest Point Church and a gofundme page which made her path to treatment possible.
“I want to thank every single person who helped me with words of encouragement and support,” she said.
“I will miss the Beaudesert community and how close it is, it will be heartbreaking moving away so soon.
“Everyone in town is so beautiful, when someone needs help the community always has your back and that is what I love about it.”
