I am someone who battles with a number of rare and incurable illnesses. After falling ill in November 2013, I went from running half marathons to not being able to stand. After years of bizarre symptoms, hospital stays, and countless doctors appointments, I dislocated my hip and was eventually diagnosed with a rare, degenerative connective tissue disorder called Ehlers-Danlos Syndrome. In turn, this has caused a heart condition called Postural Orthostatic Tachycardia Syndrome (PoTS)- my heart no longer functions unless I'm horizontal. It is a debilitating condition that affects every aspect of my autonomic nervous system. It has also caused a serious spontaneous allergic condition called Mast Cell Activation Disorder- my body is spontaneously allergic to itself. The NHS don't fund treatment for Mast Cell Activation Disorder or Ehlers-Danlos, and very few cardiologists will treat PoTS. All three conditions are poorly understood and rarely diagnosed. I am passionate to help others in the difficult situation that I find myself in, which is why 10% of my proceeds will be split between the charities. In December 2016, my dad had a catastrophic stroke, which is why I am also supporting Stroke Association. This is not a sob story, but one of hope. I am determined to maintain a happy life doing something I love, despite the difficulties I face. '

I would love to raise money evenly across the four charities so please feel free to visit my other pages and see if any are slightly behind! ( I will donate the portion to PoTS UK as they don't take donations through Just Giving) 

I will brave the shave on the 1st November, 5 years on from the beginning of this rollercoaster.

What is Ehlers-Danlos?

Ehlers-Danlos Syndrome (EDS) is the name for a group of rate and progressive genetic conditions that affect the connective tissue and collagen of the body. Connective tissues support the skin, tendons, ligaments, blood vessels, internal organs and bones. Thus a person with EDS can have varying symtoms from frequent dislocation to mitral valve prolapse. There is no cure. Only management. 

What is PoTS?

Postural Orthosatic Tachycardia Syndrome (PoTS) is a life altering and debilitating chronic health condition. Simply standing up can be impossible for people with PoTS as their body is unable to adjust to gravity. Symptoms include headaches, severe fatigue, palpitations, blackouts/collapses, nausea and dizziness. It is said that someone living with PoTS has a similar quality of life to someone living with COPD or Congestive Heart Failure.

What is Mast Cell Activation Disorder?

Mast cells, a type of blood cell, play an important role in the body's immune system. They reside in all the body tissue and form part of the body's initial defence system. Mast cells react to foreign bodies and injury by releasing a variety of potent chemical mediators, such as histamine when activated. In a healthy person these chemicals will act beneficially to protect and heal the body, but in a person with MCAS these same chemicals are inappropriately triggered and released and have a negative effect on the body. Amongst the triggers are an extensive variety of foods, exercise, chemicals, fragrance and stress. Many sufferers struggle to identify their triggers and the condition is both difficult to manage and potentially life threatening.