Any more donations we receive will go towards my rehabilitation post surgery at home which will include physiotherapy, speech and language therapy and consultations with a maxillofacial surgeon here including botox for the muscle spasms.
Further donations will help cover the genetic testing I have to get to identify if I have any other EDS related gene irregularities , treatment and procedures for my organ prolapses and my upcoming treatments and appointments with specialists in the areas of gastroenterology , gynaecology, urology, cardiology and neurology.
EDS will be a life long battle as there is no cure but I am full of hope and determination to live life the best way I can and to hopefully help others living with EDS along the way . Thank you all from the bottom of my heart ,
Follow my journey on Instagram at lisahopper_music and on YouTube at Lisa's zebra life.
Over the past few years I've been diagnosed with Ehlers Danlos Syndrome (EDS), Mast cell activation syndrome, Postural orthostatic tachycardia syndrome and gastroparesis, amongst other things.
I am reaching out to ask for your help in getting much needed surgery related to my EDS condition and essential MRI scans (see below for all the details !). I would be beyond grateful for any donation you may be able to give. As a singer and writer it's my dream to use my passions to raise awareness for EDS and try to help others living with this difficult condition. You can follow my journey on Instagram at lisahopper_music and YouTube at Lisa's zebra life. It would mean the world if you would follow both of these accounts to help me raise awareness .
EDS is a connective tissue disorder where the collagen is faulty. Collagen is the most abundant protein in the body and therefore EDS affects the joints, bones, skin , organs, muscles and all of the bodies systems including the digestive system, nervous system, vascular system and immune system. I have suffered organ prolapses of the small bowel, kidney , stomach , bladder and uterus along with dislocations & subluxations of the ribs , shoulders , knees , pelvis, collar bone, bones in the hands & feet and neck and also my jaw.
One of the worst affected areas for me currently affected is my jaw and spine . My jaw is in a constant state of subluxation (partial dislocation) or dislocation as my connective tissue isn't strong enough to hold my jaw in place . Therefore the muscles in my neck and face are in constant spasm as they are trying to support my jaw. This is extremely painful and prevents me from eating normally, causes severe pain and discomfort after talking and affects my sleep & daily life.
I've been going to physio weekly for over three years now and have attended one of the top maxillofacial ( face and jaw) surgeons in Ireland for a consultation. He confirmed that my jaw was too bad and that the surgery would be too difficult to do unless the surgeon was an expert in EDS, as EDS can cause major complications in surgery.
Unfortunately we have no EDS specialists in Ireland and that means I have to travel to London to get the surgery done by an EDS specialist there. This was meant to happen over a year ago but was postponed because of the pandemic and my jaw has gotten increasingly worse.
The constant spasms in the back of neck have caused my spine to curve the wrong way (kyphosis) and I now have disc degeneration, pain, bone spurs, neck instability, hypermobility and many other symptoms. Because of this I will have to get specialised scans of the Craniocervical Junction to show how much instability is present and to check for chiari malformation (where brain tissue extends into the spinal canal) and atlantoaxial instability. MRI scans in a lying flat position do not accurately show these issues in patients with EDS, so these will be done by upright MRI to assess the affects in a standing position. There are no upright MRI machines in Ireland and these symptoms can all be dangerous if left untreated.
Unfortunately none of this will be covered by insurance or the HSE. The minimum the surgery and scans will cost is €15,000.
I would like to Thank you all in advance for your kindness and support , Lisa xx