ON March 31st Ashley De La Mode hosted the first Living with Kidney Failure Talk. It was held in Crouch End Picture House in London.
Supported by Black|Up Paris, the event was a success. Most people who attended said to have understood the condition a lot more and would possibly be willing to become organ donors.
The talk is created to bring awareness on Kidney falure. Creating a platform for anyone suffering the condition to express themselve.
Most people with organ failure do not know it until it's too late. By bringing awareness we will be able to save lives, and also educate the masses on the complex and sensitive subject of organ donation.
From left to right.
Will, Jerry, Daniel.
Will has been going through diyalisis for 12 years. His story is so powerful and inspiring. Will currently works as a music producer.
He had the unfortunate experience of going through surgery to receive a transplant that he never ended up receiving because his heart failed during surgery. So they decided not to give him the new kidney at the time. It was incredible to listen to Will's story and how he overcame such trauma. On his day to day Will supports kidney failure patients and reassures them on their fear of dialysis.
Jerry has been going through Diyalasis for over 8 years. Jerry was gifted with a transplant a few years ago, he explained how it changed his life and the convenience of being able to live at his potential. Sadly his kidney failed after a couple of years which led him to go back on diyalisis. Regardless of what he's going through he is pulling through and is helping his community on bringing awareness on organ donation.
Daniel has been on diyalisis for just over a year. During that year Daniel has discovered a lot about the condition. He was on 5% kidney function for about three years which was extremely fantastic Given that the doctors had advised him to go on Diyalasis a few years back. He studied and found a way to last on 5%kidney function. He was eligible for a kidney then found out that his heart was too weak to handle a transplant. However, he also has diabetes which makes his kidney function a lot worse. Daniel has to find a double transplant, a kidney and a pancreas so his case is highly in need of support.
Listening to everyone share their story was highly incredible and powerful.
We are all on different stages and we were all able to share each level.
On March 31st I will be doing my first ever public speaking engagement on kidney failure. I will be using myself as a primary exampe, underlining the difficulties with the condition, my accomplishments despite the condition and my hope for a kidney transplant. However, I want to bring a better awareness and understanding to my condition. During my search for a kidney, I have found that many within the ethinc cominities do not beive or know much about organ doantion. I chose to do these taks, to inspire to motivate and to teach. You do not need to let your condition define you, you too can achieve what you want to work on in your life.
Come and listen to me talk about my personal experiences to see and believe that it can happen to you too.
We need more donors from Black, Asian and minority ethnic (BAME) groups because:
Patients from Black, Asian and minority ethnic communities are more likely to need an organ transplant than the rest of the population as they are more susceptible to illnesses such as diabetes and hypertension, which may result in organ failure and the need for a transplant.
On average, patients from the Black, Asian and minority ethnic communities will wait a year longer for a kidney transplant than a white patient, due to the lack of suitable organs. Blood and tissue types need to match for a successful transplant and organs from people from the same ethnic background are more likely to be a close match.
What it's like to live with kidney failure, working in the entertainment industry and being a mother to a beautiful 14 year old. .
I've been trying my best to explain my situation with my chronic kidney condition. It's very complex because I look well as they say. Kidney failure is a silent killer. It creeps up on you and if not managed properly your chances of survival are very slim. I am so fortunate to not be on Diyalasis yet; although I should medically be on Diyalasis the doctors have decided to let me be because "I look well"
I may may look well, but I do not feel well. everyday is a difficult day. I fight the odds of my condition because I am strong and I am willing to live. I love life and I want to continue to be alive sharing the world with my beautiful daughter.
It's often a mental battle when I think about the severity of my situation; when my bones ache and at times I cannot walk. Hanging out with people who do not understand my condition and judge me for my lack of activity; but they have no idea that when I say I am in pain; I am really in pain. Just because I smile and I am so positive; it confuses people around me.
***I am naturally a happy person***
The reason why I do so much, especially with my business is because I dont have anything to lose. When you have a chronic condition; you understand one of the main factors of life and that is "do it now because you may not see tomorrow".
I want to share my story globally; to make people see that you really can't let your condition affect you. You too can fight it. Don't let it rule you. People are suffering from mental illness, cancer, organ failure and more. Everyone needs to use their voice.
Everyday is a battle and I'm winning the fight so far. I am bringing awareness to the lack of organ donors amongs the black population. Many are not aware of how to even become organ donors. many are scared but mainly a lot are ignorant with the matter.
I'm praying that sharing the matter with the world will make a difference. And off course I will find a kidney. Some days are good some days are bad but I always have faith no matter the emotional status.
Ashley De La Mode
I am still doing some research on how you can become an organ donor. However my hospital has a live donor team can explain the steps into becoming an organ donor.
***Royal Free Live Donor Team***
020 7317 7604
Tests you need before surgery. Testing to see if you can donate a kidney begins with a blood test. The test will determine your blood type and if it will match the recipient's blood (compatibility). If your blood type is compatible with the recipient, two more blood tests will be done (tissue typing and cross-matching) ...
Given that some countries like America need insurance before you actually get tested; I am working on finding centers that will able Americans to get tested for free to see if they are a match.
Please stay tuned with this page for more information.
I had my first fistula fitted in my arm back in May 2017. You would not believe the struggle and pain of this surgery. The worst part was not only emotional but physical as the fistula did not work. What is a fistula? A fistula is an artificial vein created by a surgeon. The vein needs 12 weeks to mature, with that vein you will be able to go on dialysis. The fistula is always a best option for dialysis as it allows the blood to transfer easier during its cleansing.
Anyway; I have grown up with no scars, yes I was one of those sheltered children who never had a scar on her body. So having to go through surgery was highly emotionally stressful as I was terrified of the scars. Can you imagine my horror when the doctors said that fistula didn't work? I was so upset. I was rescheduled for July where they fitted it on my upper arm and now by the grace of God it works. Everyday, I feel the blood rushing through my veins. It's very loud and buzzes like a mobile phone. Its not the best as I love to sleep on my arm and I can't any longer. I can't wear tight lycra clothes anymore or even a tight jacket but as they call "The fistula is a Life line"
Back in April 2017 I had a surgery for the removal of my dialysis catheter that was embedded in me for over 5 years.
The surgery took longer than expected
I was in intensive care for three days as I was not responsive and off course needed 24 hours care.
While I was non responsive, i was able to hear my family and friends talking around me. I was responding in my head but they couldn't hear me. That was a very weird experience that i wanted to share with you guys.
I'm a single mother of a 14 year old daughter who is absolutely amazing. I have taught her everything that she needs to know about kidney failure. I love and admire how she helps me with my day to day living. I understand that it is not easy to live with a mother who is ill, Kelliyah has adapted to my condition. She prays with me and is always providing me with the outmost positive energy. I advise every parent who is ill to always be open and honest with their children about their medical condition, as children understand things differently and can actually help you into a better health care recovery.