Isabella featured in Brock Elbank Scar Series
Donation protected
Being born with a severe facial cleft has always played a large role in my life. It’s the first thing someone sees. With over twenty-three reconstructive surgeries to date, the scars that I have as a result are the physical representation to some struggles I have endured. Less visible are the internal scars that affect me every day.
After a minor car accident in 2014, doctors discovered a tear and bulge on my carotid artery. Fearing that this would lead to a life-threatening aneurysm, further tests were run and I was subsequently diagnosed with the rare connective tissue syndrome known as vascular Ehlers Danlos Syndrome (EDS). The pamphlet the geneticist handed me, alongside my diagnosis, put a life expectancy of those suffering from vascular EDS at 48 years old. At 18, this piece of paper informed me that my body was going to slowly deteriorate, having a child was probably not an option, and a seemingly “normal” carefree life was over. Processing all of this at the forefront of my adulthood has been an isolating challenge. Roller coaster rides are no longer an option, forget about surfing or rock jumping, or any impact activity other peers my age might enjoy without a second thought. This diagnosis changed everything for me. It changed how doctors and the healthcare system handle the extensive care I need. Now it is even harder to find a surgeon that will operate on me, not to mention the limits on medications I am able to take. Overnight I became a high-risk patient and a liability for insurance. On the other side, this diagnosis finally gave an explanation to the day to day symptoms (including heavy bruising, early onset varicose veins, joint dislocations, and abdominal, muscle and joint pain) I had long suffered from. Much of this experience has brought me in front of a myriad of doctors who have made me feel unseen and subsequently misdiagnosed ailments related to EDS. Due to this, it is my goal to bring awareness around EDS, what it’s like living with a cleft, and the challenge I have faced within the medical community in hopes that fewer individuals with rare conditions fall through the cracks of our healthcare system.
I am thrilled for a new opportunity that would allow me to bring my story to a larger platform. I have recently connected with a phenomenal photographer in South London, Brock Elbank, who is currently working on a photographic series that centers around scars. In addition to photographing the individuals, Brock has used his platform to bring awareness to the stories, conditions, and anomalies, humanizing the experiences behind the scars many of us bare. I have been invited to join Brock in South London as a subject in this series. For so long I have been seeking different avenues to bring awareness about my cleft and the less visible scars associated with EDS, and this opportunity has the potential to reach an enormous audience.
To make this happen, I need the support of my community to get me to South London. In the pursuit of this effort, I am asking for donations to help me kickstart this leg of my journey. No amount is too small, and every single dollar is appreciated.
Opening up to my community about such personal vulnerable experiences is huge, terrifying, and deeply cathartic. Your interest in my story gives me strength to charge past any limitations by focusing on what I can do, over all that I cannot.
For more information about the artist and his work, feel free to check out his Instagram @mrelbank.
I am who I am because of each one of you; thank you for your continuous love and support.
After a minor car accident in 2014, doctors discovered a tear and bulge on my carotid artery. Fearing that this would lead to a life-threatening aneurysm, further tests were run and I was subsequently diagnosed with the rare connective tissue syndrome known as vascular Ehlers Danlos Syndrome (EDS). The pamphlet the geneticist handed me, alongside my diagnosis, put a life expectancy of those suffering from vascular EDS at 48 years old. At 18, this piece of paper informed me that my body was going to slowly deteriorate, having a child was probably not an option, and a seemingly “normal” carefree life was over. Processing all of this at the forefront of my adulthood has been an isolating challenge. Roller coaster rides are no longer an option, forget about surfing or rock jumping, or any impact activity other peers my age might enjoy without a second thought. This diagnosis changed everything for me. It changed how doctors and the healthcare system handle the extensive care I need. Now it is even harder to find a surgeon that will operate on me, not to mention the limits on medications I am able to take. Overnight I became a high-risk patient and a liability for insurance. On the other side, this diagnosis finally gave an explanation to the day to day symptoms (including heavy bruising, early onset varicose veins, joint dislocations, and abdominal, muscle and joint pain) I had long suffered from. Much of this experience has brought me in front of a myriad of doctors who have made me feel unseen and subsequently misdiagnosed ailments related to EDS. Due to this, it is my goal to bring awareness around EDS, what it’s like living with a cleft, and the challenge I have faced within the medical community in hopes that fewer individuals with rare conditions fall through the cracks of our healthcare system.
I am thrilled for a new opportunity that would allow me to bring my story to a larger platform. I have recently connected with a phenomenal photographer in South London, Brock Elbank, who is currently working on a photographic series that centers around scars. In addition to photographing the individuals, Brock has used his platform to bring awareness to the stories, conditions, and anomalies, humanizing the experiences behind the scars many of us bare. I have been invited to join Brock in South London as a subject in this series. For so long I have been seeking different avenues to bring awareness about my cleft and the less visible scars associated with EDS, and this opportunity has the potential to reach an enormous audience.
To make this happen, I need the support of my community to get me to South London. In the pursuit of this effort, I am asking for donations to help me kickstart this leg of my journey. No amount is too small, and every single dollar is appreciated.
Opening up to my community about such personal vulnerable experiences is huge, terrifying, and deeply cathartic. Your interest in my story gives me strength to charge past any limitations by focusing on what I can do, over all that I cannot.
For more information about the artist and his work, feel free to check out his Instagram @mrelbank.
I am who I am because of each one of you; thank you for your continuous love and support.
Organizer
Isabella Noelani
Organizer
Mill Valley, CA
