Hey there,

My name is Lavender. I'm fundraising to be able to access private medical healthcare after over three years waiting on the NHS, with a year more minimum to be expected.

The first photo on this is the day I got the 99% all clear for my heart condition, after not knowing whether I would need heart surgery at the age of 14 for my mitral valve not being great at being a mitral valve. That was a looong ten years. After spending most of last year in and out of hospital, hooked up to heart monitors; thrice weekly blood tests and a resting heart rate of 126+BPM from the stress of this, whilst trying to pursue education, I thought all of the medial tribulations would be behind.

Unfortunately Ehlers Danlos has other plans. Its a connective tissue disorder originating from an improper creation of collagen which is what we are all foundationally made out of. Not ideal! Along with a great variety of party tricks and contortion abilities, its highly associated with a number of syndromes and autoimmune issues.

My markers of an ANA test showed up positive for mixed centromeres, which indicates the immune system is producing antibodies that attack the mitotic machinery of cells. In short, the body attacking itself.

I've been able to get by until somewhat recently, with regards to mystery allergies flaring up, causing respiratory stress and frequenting A&E constantly, which has led to countless appointments and referrals.

I can't wait any longer without risking further damage to my body, and am seeking to raise funds for private testing at Montefiore Hospital. The initial appointment is for late May and just 60 minutes is £240. There will be specialist consultations and follow ups, diagnostic testing and evaluations after this.

I'm very grateful to the NHS. They've done so much and have an incredible array of staff working overtime; thank you to all of the blood test nurses especially. You guys rock.

I'm a not-for-profit musician who donates all performance income primarily to the WRAS Animal Rescue charity after the ability to physically help out diminished, raising over £1,000 last year alone. It feels very strange to be on the adjacent side, and a lot of nerves, but there isn't any other choice as of right now. I can't wait for this all to blow over and be able to give back again.

This GoFundMe will go to:

• Medical appointments - a 60 minute initial appointment is £240
• Travel costs
• Supplements (to try and get above 50kg - the dream!)

As this is the very beginning of a private healthcare journey, I have no clue what to expect going forwards in terms of appointments or costs. This will be updated as we go along. Thank you for reading. If you'd like to check out what am up to musically, here's a link to the dark harp Instagram :

Lavender x