HELP LUCAS CAMPBELL GET HIS LIFE BACK!

Hello everyone, my name is Lucas Andrés Campbell, I am a 30-year-old Argentinian suffering from a rare congenital disease, which is complex and difficult to diagnose, known as "Ehlers-Danlos Syndrome" (EDS). A large part of the medical world has not yet understood the complex multi-systemic nature of the different types of EDS. My type is referred to as “Hypermobile”, a condition that affects each of the body systems. One of the greatest complications this connective tissue disease brings is a malformation of the spine known as "Tethered Cord Syndrome " (TCS). Given the scant awareness of the disease, it took me a lengthy and very painful 8 years until I was eventually given a diagnosis, involving consultation with numerous specialists in Argentina, Spain, France and, finally, the United States, where I at last found a group of neurosurgeons able to untether my spinal cord. This surgery and the ensuing rehabilitation will significantly relieve the pain and other comorbidities caused as a result of this condition. 

The costs of the required surgery and further rehabilitation are exorbitantly high and I am unable to afford them today after exhausting all my savings and family assistance in my search for a diagnosis. For this reason, I am following a suggestion put forward by others who, like myself endure this rare malady and have decided to ask for help. The following is a detail of the path that has brought me this far: 

Until the age of 23, I was a cheerful youth with a promising future. I lived a fulfilling, normal life at home with my parents and brothers. I finished my schooling and started out at college; I played rugby and cricket, and got together with friends, enjoying life to the full.

Towards the end of 2014, just a year before finishing my university studies, my ordeal began.

I graduated with a degree in Foreign Trade and started to work, but my ailments got worse and worse to the extent I no longer wanted to live. My body was telling me that something was wrong, but no physician could get to the bottom of what was the matter with me; they were unable to give me a diagnosis and suggested I should see a psychologist.

Over the years, my symptoms worsened. Chronic and acute pelvic pain so crushing that today I can hardly tolerate being seated for any length of time, and even the weight of wearing my clothes is sometimes too much for me. Severe digestive and reproductive system dysfunctions, among other discomfort, have continually and progressively deteriorated the quality of my life.

I traveled to Spain to see a specialist in pelvic floor pain and dysfunction. Unfortunately, not only did my health fail to improve but my situation worsened drastically after submitting to some very invasive practices. Overwhelmed by it all, I returned to Argentina, simply desperate to find a healthcare professional who would be able to help me. I was certain this was nothing psychological – there had to be something they were overlooking. 2018 was a very harsh year, with increasingly severe pains and imbalances. Even though I never gave up, medicine was not giving me an answer.

I traveled back to Europe, this time to France, for consultations with physicians recommended to me by people suffering from the same afflictions as I was, but I got nowhere with them. I was only offered temporary palliative treatments without a clear diagnosis. My anguish increased along with my suffering. 

The recurring suggestion recommending I should see a psychotherapist – inasmuch as I must admit the support they provide is invaluable – did nothing to solve my ailment, and seemed to be the result of the powerlessness of those from whom I was seeking answers.

In 2021 I traveled to the United States in search of a resistance stretching technique said to be having very good results for patients with chronic pelvic pain. In spite of having trained for over 6 months, once again the treatment failed to achieve any results, and the pain kept getting even worse. It was then a physiotherapist said to me "when you are unable to connect so many health issues, you should consider the existence of some genetic problem affecting your connective tissue".

Tired of so much pain, I started trying to connect up all the symptoms I have and have had since I was born. Aware that I had severe digestive, joint and vascular problems relating to my nervous system, I consulted a geneticist. At last I found someone able to interpret my words and understand what might be happening to me. Though the type of my syndrome cannot be clearly identified with genetic analysis, I was diagnosed with "Hypermobility Ehlers Danlos Syndrome"(EDS) and told that everything that was happening to me involved comorbidities of this disease. 

With this diagnosis, I went into several EDS Facebook groups, and saw my situation reflected in thousands of persons. It was these people who slowly guided me to where I am now. The first recommendation was to send my tests and imaging to a physician specializing in EDS and cerebrospinal fluid pathologies at Rhode Island Hospital and, without the need for any further testing my tethered cord syndrome was confirmed.

At long last today, after so much pain and anguish I have a diagnosis and the possibility of recovering my life. I know the financial situation is hard on all of us, and will of course understand if you are unable to help me, but I am extremely grateful to you for reading and sharing my story.

 

Thank you all!!!

Lucas Campbell