Hello Everyone,

Thank you so much for clicking and viewing our sponsorship
page. I am very lucky to have such an amazing family and five of them brave enough to complete a sky- dive to raise money for Ehlers Danlos Syndrome.  I feel very anxious posting this as I am a very private person, but I want to raise awareness of EDS and help others who are suffering to get a diagnosis.

Many of you might already know that I am a sufferer of
Ehlers Danlos Syndrome (EDS), thus I want to bring attention and raise awareness of this condition to help fund crucial research into finding a treatment, management plan and hopefully a cure. Unfortunately, I have been suffering for many years and in the last few years my general health has deteriorated rapidly. I will start with my story; in 2012 I was taken into hospital suffering with severe pain thinking it was appendicitis, thankfully it wasn’t but after a few investigations I was diagnosed with Endrometriosis, adenymyosis and polycystic ovaries, with the help of Zoladex injections and
other medications it was under control.

 I then began suffering with my bladder,loss of control, extreme pain and urinating blood.  During the time of my bladder being investigated I began vomiting and suffering with severe cramps after eating, this became progressively worse over months to the point I was taken into hospital as my heart rate was at its maximum and my body couldn’t cope anymore.

During this time after having an endoscopy (one of the many, many tests I have endured) I was informed I have hypermobility and the first time I had heard EDS mentioned. I didn’t know what this meant, but soon came to find out.

Ehlers Danlos is a genetic connective tissue disorder involving collagen which holds the body together; it is multi-systematic and effect’s every organ, and bodily function. I am in chronic and constant pain daily from head to toe, I suffer with headaches, joint dislocations and unstable joints, abnormal bladder which constantly cracks and bleeds causing infection- Interstitial Cystitis, loss of control and severe pain. Risk of organ prolapses. Gut dismotility- unfortunately my bowel and part of my stomach is paralysed and no longer is working. I am unable to eat solids and I am on nutritional supplements from the hospital. Due to EDS I have secondary conditions that effect the functioning of my liver, heart, respiratory and brain functions. Also I suffer with POTS which results in me collapsing, feeling dizzy, heart palpitations, which is due to the blood not being able to reach my heart and brain in time particularly when changing postural positions. It is an abnormality in the way the involuntary part of the nervous system functions. 

Mast Cell Activation Disorder which is an autoimmune disorder, this is where my own body – the immune system  is attacking itself due to high levels of histamine in my body and is actually damaging organs, tissues and the functioning of the body . I suffer with constant infections in my bowel and bladder and It effects my skin with eczema. 

I also struggle with walking and everyday activities, even getting out of bed can be a struggle.I suffer with multiple joint dislocations by doing the simplest of tasks such as walking my dogs, migraines, nausea, chronic pain, low blood pressure, vomiting, unable to eat, fatigue, joint fragility- my body struggles with holding joints in place, skin fragility, scoliosis- curvature in the spine, nerve damage, severe cramping, sleep disorder, anxiety, and many more symptoms and struggles daily.

It is a condition that we as a family have to deal with on a day to day basis. My mum is my carer and without my mum supporting me and pushing the hospitals constantly I would not have the diagnosis I have today. My family are truly amazing, I have suffered with my mental health recently and without them I wouldn’t be here. My mum is the most amazing, caring, wonderful person; she is my rock and looks after me on a daily basis. My Dad Barry, Sisters Amy, Lauren, Brother Paul, and Amy’s boyfriend Brandon are a constant support. My husband Ben has been by my side giving me love and laughter through some tough times. My best friend Annette, who has given me two darling god children and no one could ask for a more beautiful, supportive best friend! 

My family are my world and mean everything to me they give me the courage to get through everything and live with my condition. I am totally overwhelmed and emotional Paul, Lauren, Ben, Brandon and Annette want to do a skydive for EDS. To raise funds specifically for Professor Aziz to research ways in which to help EDS patients especially those with gut problems. I always try to be positive, EDS doesn’t define me even though it felt like it has in recent years, I am still Victoria behind this  and I want to help other sufferers in any way I can so by raising money we may find a cure for this debilitating condition.  

Every donation means so much to all of us. Please find below the link to the EDS website if you would like to know more information about the condition or the research being conducted.

Thank you for all your kind love and support

Victoria

https://www.ehlers-danlos.org/