Hi, my name is Paris, I’m 22 and I’m fundraising to continue access to private medical care that has now become essential for my health, future and quality of life.

I was born with an extremely rare genetic mutation affecting one of my plexin genes along with hip dysplasia. both of which weren’t diagnosed until irreversible damage had occurred. I’ve faced significant medical challenges from childhood all the way into adulthood. Over the past three years especially, my health has declined considerably. i live with POTS (postural orthostatic tachycardia syndrome), A form of dysautonomia. A disorder of the autonomic nervous system, which controls things like heart rate, blood pressure, digestion, and temperature regulation. For me, POTS means that just standing up can cause my heart rate to spike, make me dizzy and leave me feeling completely drained. It affects my ability to do everyday things - walking, showering, even sitting upright can be a struggle. I now rely on a mobility aid full time. Despite numerous appointments (51 this year alone) scans, blood tests and urinalysis. specialists have been unable to fully explain what’s happening, provide an effective medication or treatment plan.

The NHS is wonderful in some ways, and a disaster in others, especially for complex and chronic health issues. In April of this year I began my private healthcare journey and was diagnosed with hEDS (Hypermobile Ehlers-Danlos Syndrome) a genetic connective tissue disorder that affects collagen throughout the body. hEDS can cause joint instability, chronic pain, fatigue, and a wide range of overlapping comorbid conditions, several of which I may be experiencing and urgently need further specialist assessment for. I was diagnosed with CRPS (Complex Regional Pain Syndrome), one of the most painful chronic pain conditions known after an injury to my foot. it causes severe, persistent pain and significant functional limitations. Alongside these diagnoses, recent investigations have shown abnormal blood results which have been left untreated; including elevated inflammatory markers (CRP and ESR), abnormal liver enzymes, anti cardiolipin antibodies, high rbc with depleted iron, raised alpha 2 fractions and low potassium. splenomegaly was discovered in a recent scan in addition to daily high fevers. These findings reinforce the need for comprehensive specialist assessment to understand how everything is connected and more importantly how i can feel more like myself again.

Due to my recent decline, my symptoms have become unpredictable and severe, often leaving me unable to leave the house. This has been isolating for me as a 22 year old, watching people simply around me ‘carry on’ with their lives while i’m stuck, still in the same situation. like most, music is the most important thing in my life, and live music in particular gives me a sense of connection and normality. I can’t imagine life without it, and I don’t want to lose access to one of the few things that still brings me light and makes me feel the most alive.

The aftermath of another upsetting appointment left me researching, where I found the MEND clinic. a service with a leading physician who is experienced in complex, overlapping conditions like mine. They offer the possibility of clear diagnosis with a structured treatment plan, something I haven’t yet been able to access. Unfortunately, this care is only available privately and comes at a cost which i’m unable to fund for myself.

All funds raised will go toward:

- Initial assessment, care plan and treatment through The MEND Clinic

- Specialist consultations and follow up care

- Further diagnostic and genetic testing

- Evaluation and management of possible comorbid conditions

Asking for help is not easy, but I’m doing so because I want answers, stability, and the chance to reclaim my life. Any donation, no matter the amount, would make a meaningful difference. If you’re unable to donate, sharing this page would mean just as much.

Thank you for taking the time to read just part of my story and for supporting me in any way.

With love, Paris. <3