Thank you so much for your continued support! Diana is heading for more surgery and we are moving to another platform: https://www.justgiving.com/crowdfunding/diana-olijar
You can also follow the story here:
Edit from Diana:
I know no words to describe my gratitude to everyone who donated towards my treatment, shared the fundraiser link online or supported me throughout this rollercoaster in various ways.
I have managed to access some treatment, only thanks to your kindness and generosity. I have now had surgery to address my neck instability (14/02/2022), ongoing treatment from EDS-aware specialists, including functional dental treatment, upper cervical specific chiropractic procedures prior to surgery, ongoing physiotherapy, pain management in the form of medication, orthesis, pain-reducing devices and many many more. I can only say: THANK YOU, I SEE YOU and I APPRECIATE YOU ❤️
Unfortunately, more treatment is required and we need to continue fundraising Please follow me for more information:
➡️ Instagram: @dianaolijar
I need more surgery on 12/09/2022. This is to free (detether) my spinal cord.
My cognitive function and mobility are restricted, and I am relying on a wheelchair but I know with the right medical care my situation can improve!
We also came across some difficulties with the account, which have not been resolved despite my sister's and I appeal to the management of GoFundMe. An error has led to a refund of some of the funds directly back to donors and we made a decision to move the fundraiser to another platform to avoid this happening in the future. The new fundraising link is going to be shared on social media shortly.
Thank you for your continued support!
Being a patient with Ehlers Danlos Syndrome often means living with little to no public healthcare. This is due to lack of awareness and poor understanding of the condition and related issues. We are fundraising on here to help to obtain treatment for Diana, in order to address connective tissue disorder, including the neurological symptoms occurring due to cervical spine instability and its other comorbidities. This includes spinal neurosurgery and the cost of the pre-operative processes that the NHS could not provide.
I am writing on behalf of my beloved sister, Diana, who is a proud single Mum. Before becoming so unwell, Diana led a very active lifestyle together with her gorgeous 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 the reassuring advice that 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 turn to fundraising 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. For legal reasons I will not be giving details, however, I can confidently say I have witnessed the last 2 years being extremely painful and stressful for my sister and 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. Despite being cared for by family, friends and a support worker, she needs your help to get back to her 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 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 on to 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 (I will save you the doctor’s graphic description of the procedure!). 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.
I know how kind, ambitious and competent my sister is and it hurts to watch her struggle, when I know her biggest wishes are to always be there for her Child who deserves a Mother, live independently and, hopefully, one day be able to return to building her career.
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London, Greater London, United Kingdom