One of my aims for Braver than I knew, is to encourage the sharing of our life stories in order to help others in similar circumstances, feel less alone, and to give the rest of us a better understanding of the struggles people face.
Our latest Sharing our Stories, features Jade, a brave young lady who lives with a rare and painful condition. Thank you Jade for sharing your story.
Our latest Sharing our Stories, features Jade, a brave young lady who lives with a rare condition.
Please can you tell us what your condition is?
I have a number of conditions.
Neurofibromatosis type 1 (NF1)
This causes tumours called neurofibromas and Plexiform to grow on the inside and outside of the body and nerve endings.
Hydrocephalus with a shunt
This is water on the brain, a shunt is inserted. Which is a type of valve to drain the fluid. It has tubing connected into peritoneum.
This is a non union in a bone. I have this in my left leg.
And much more...
How long have you had this/these conditions?
I was born a warrior with an amazing family. With them and God. I know I can handle anything life throws at me with my health.
I was born with Nf1, at 12 weeks old my parents took me to the doctors. My left leg was bowed and I was diagnosed with nf1 and pseudarthrosis. I had my first operation on my leg at 2 years old. This was to insert a metal rod, straighten and strengthen my left tibia. Since then and till now, I have had many operations to try and save my leg. However amputation is now the next step - bring on half price pedicures, and losing the left legs worth in weight, after the big chop! Ha! Got to be about half a Stone right? Haha!
At the age of 5 I was diagnosed with Hydropcephlaus. I had a shunt inserted into my brain, which drains the fluid. Since then I have had many brain surgeries to put new shunts in as they often malfunction.
With my nf I have had a few tumours removed from the body, with more scheduled in the future.
Can you explain what your body feels like?
Every night and day is different. I am in pain 24/7 there is no time I’m not. My neurosurgeon once said.
Jade... people with nf have to work harder in life with chronic pain and fatigue. People with hydrocephalus have to work harder in life with chronic pain and fatigue. And you have both so will have to work doubly hard.
My body feels like a daily battle. I suffer from achy Bones. Muscles feel like they on fire. Skin feels like it’s getting pricked my a thousand needles. My limbs feel like dead weights. The tiredness is relentless, but because of the pain I can’t often sleep. My leg with the trauma of all the operations is in constant agony. But with all this. There is nothing I can’t handle with God by my side. With my future amputation. I am focusing on my new outlook on life, adapting to a new ways of living life. I’m excited to have freedom from the leg pain, with a cool new bionic leg to show off and be proud of.
How has your life changed since diagnosis?
As I was born with these conditions I don’t know anything different. I may not win the battle sometimes but I fight daily to be the best I can be. There isn’t anything I can’t handle. I have a big fighting spirit that likes to kick butt and thrive.
Have you tried any alternative therapies, and if so did any work for you?
I have had many treatments and therapies for my conditions. From operations , medication, pain management, meditation and CBD. Unfortunately they have not worked but help me deal with each day. I am hoping in time after the chop to be able to come off morphine.
What do you wish people most understood about your condition?
There isn’t a lot of awareness for my main condition NF. It is the root of my conditions of the other main 2 I have.
Nf can effect everyone who has it so differently. I would hope people would understand what the condition is, what it can cause and why I am constantly fatigued , sometimes a bit ditzy and forgetful. But I do find I laugh at my self often with my family and friends, at some of the silly stuff I do.
How can someone best help you?
People can help me by just being present. By Checking in. A simple text can change my whole day. I have the most amazing family and friends who do this.
They often cook meals for me, help with my day to day chores and shopping. When Family and friends visiting me they always make me smile. Especially my nephew and niece. Who accept me for me.
Are there any positives to having your condition?
I don’t enjoy having my condition but it’s made me who I am today, along with Jesus. I really try and have a fighting spirit, seek god and just get on with it. I take each day as it comes and love my life. It frustrates me when I have to cancel. But I love my home and being in it. I am very blessed. The positives with having my condition. Is I have met some incredible people on my journey. They are such warriors and help me through.
What is your favourite way to distract yourself?
My favourite way to distract my self is church. Gods love covers all and makes my heart so happy. I also enjoy doing craft like sketching, colouring and 5D painting. I really want to learn to sew soon. Netflix and you tube are a big part in my distraction. I get lost in different series and crafting videos as it passes the time when Im in a season of recovering. I also like to read a good thriller or a story with a big twist.
And finally, how does wearing your Braver than I knew shirt, make you feel?
I love how braver than I knew makes me feel. I want to conquer each day with strength, bravery and give people hope. Wearing the sweatshirt makes me feel like I can. It can often get people talking and asking questions. It’s always great to talk, to help each other’s on life’s journey. It also keeps me so warm and cosy. I love it.