­­Diana Needs Your Help - EDS

Diana (33) is a single mum struggling with EDS and its comorbidities. We are fundraising for neurosurgery to address her neck instability on the 8th of Nov 2021, treatment for dislocating joints, physiotherapy and care she so desperately needs.

Diana is a single mum whose life is at risk. Before becoming so unwell, she led a very active lifestyle together with her daughter. Diana was employed as Cabin Crew at Thomas Cook Airlines, volunteered with Home-Start (Manchester-based charity), qualified as a Law Interpreter, modelled, hiked and greeted every day with a smile.

Even though her health has been gradually deteriorating, she kept pushing through, trusting she just needed some rest and a good night sleep... whilst dealing with widespread pain, extreme fatigue, migraines, balance issues, fainting, subluxing and dislocating joints, hearing and vision issues, digestive problems and a whole myriad of other symptoms. This continued until she collapsed and was no longer able to show up for work duty.

After a lengthy struggle and countless drop attacks, she was eventually diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS), which is a type of dysfunction of the autonomic nervous system, and Ehlers Danlos Syndrome. EDS is a multisystemic condition, which means it affects the skin, tendons, ligaments, blood vessels, internal organs, bones etc. More information can be found here:https://www.ehlers-danlos.com/what-is-eds/.

Despite the severity of the condition and its debilitating symptoms, EDS is thought of as an ’invisible' illness as people can look healthy on the outside, even though they are suffering from severe symptoms. As with many medical conditions, EDS disproportionately affects women and it takes an average of 10 to 20 years for individuals with EDS to receive a diagnosis. Sadly, specialist services for the condition are very limited within the NHS and many EDS patients are forced to fundraise in order to cover, often life-saving, medical treatment. Patients like Diana struggle due to a general lack of awareness and understanding of the comorbidities of EDS, which are well explained by Ehlers Danlos Support UK:

Thanks to Diana’s resilient nature, she has been very proactive in trying to deal with her health issues and disabling pain. She even travelled abroad to seek treatment in form of: Prolotherapy / Platelet Rich Plasma, massages, Salus Talent therapy, Sirio, lndiba, Hyperbaric Oxygen Therapy (HBOT), periarticular collagen MP therapy, manual therapy, matching of the orthopaedic insoles and regular spine and fascia training (conducted by a physiotherapist to reduce tension and for pain remission).

Unfortunately, Diana’s treatment got interrupted. With the last 2 years being extremely painful and stressful to her, this has come not unexpected, that her health condition deteriorated even further. At this point, when the symptoms flare up, she has to rely on the use of a wheelchair just to be able to leave the house. She needs your help to get back to the treatment. She has been signed off unfit to work for over 3 years now and as a result, is unable to cover the costs entailing.

The most concerning area is her neck instability - Atlantoaxial and Craniocervical Instability. According to The National Institute for Health and Care Excellence guidelines (https://www.nice.org.uk/guidance/IPG146) :

 ‘’Atlantoaxial instability (excessive movement between the first and second vertebrae of the neck) can be caused by trauma, malignancy, inflammatory or congenital defects.  It can present as local spinal pain, but if the spinal cord is compressed symptoms such as clumsiness, lack of coordination, difficulty walking, high cervical paralysis or death may occur.  Treatment is by stabilisation of the C1 onto the C2 vertebrae’’.

At this point, we are exploring the surgical route and the course of action proposed by Diana’s neurosurgeon is a spinal fusion. During the course of the examination, it was noted that her craniocervical junction stomatognathic stress test also indicated a cranial dental primary, which requires attention prior to stabilising her spine.

We are fundraising to support her with the above-mentioned forms of treatment, as well as essential for her condition supplements and medication, and to address accumulated debt of medical bills, specialistic tests/ scans and related costs.

Thank you!
We now have a date of the surgery, 08/11/2021, and also more details about the procedure were provided by the neurosurgeon. 
The priority is to address significant hypermobility at the craniocervical junction and atlantoaxial instability. Therefore this is going to be done before the tethered spinal cord can be dealt with, as those are the most urgent issues. 
Firstly, there needs to be performed preoperative traction to find a position where the symptoms improve. 
Surgery will be under general anaesthetic. The surgeon is going to insert two percutaneous screws into the C1 and C2 bones. Decompression of the posterior arch of C1 and some of the foramen magnum is going to be performed. Depending on the operative findings, a duroplasty may be performed. The head is then going to be adjusted in the agreed preoperative position. The rods and bone graft are going to be placed and the wound stitched up. This will then need to be monitored and CT scans performed after a year to assess for screw loosening and fusion.
We are then going to move on to take care of other affected areas: shoulders, collar bone, ribs, hips, knees, ankles...
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