https://zebraheard.org/home daily 1.0 2025-06-16 https://images.squarespace-cdn.com/content/v1/604f1767000a5a49386520f1/969ece05-82f4-4853-b644-945b6395c05a/IMG_0896.jpeg Home - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/604f1767000a5a49386520f1/1617198127991-FRVY6BLRUU1S7LNDU0AT/49049890_10156696525491480_7905007468588040192_n.jpeg Home - After a 40 year battle for answers… ….Julie was finally diagnosed with a collection of rare conditions. Put simply, Julie has a rare connective tissue disorder (Ehlers Danlos Syndrome) which gives her further very rare complications making her ligaments too weak to hold her skull to the vertebrae in her neck efficiently. This results in her brainstem being stretched and crushed by these unstable, moving bones. This causes devastating and painful symptoms in every body system. Julie also has a related condition called Occult Tethered Cord Syndrome where the spinal cord is attached to the inside of the spinal column and gets stretched causing many further symptoms. This condition, left untreated, leaves Julie vulnerable to dying if her skull or vertebrae dislocate in a direction which either causes pressure on essential body function areas (such as breathing, heart beat modulation, and more), an internal decapitation (where the skull completely cuts through the spinal cord severing all connection between the brain and body but contained within the tissues of the neck) or damage to other essential body function areas of the brain stem. Not having surgery would also mean life long intense pain and a life spent in bed. This surgery is Julie’s last treatment option. https://images.squarespace-cdn.com/content/v1/604f1767000a5a49386520f1/1630511150460-KRS5L1ULHIMSJ565UDDO/156928721_286369189519439_4757264733339525786_n+2.jpg Home - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/604f1767000a5a49386520f1/b604210a-51c7-4eb5-ac26-2a69d6e7406f/IMG_1222.jpeg Home - Make it stand out A 3D reconstruction of a CT scan of Julie’s cervical spine showing a horrifying dislocation of her skull and cervical spine when her head is tilted upwards. https://images.squarespace-cdn.com/content/v1/604f1767000a5a49386520f1/98b49aa3-c709-40b6-b9b2-540d5cb0981f/IMG_1221.jpeg Home - Make it stand out A disturbingly large subluxation of Julie’s cervical spine and skull on turning the head to the left. https://images.squarespace-cdn.com/content/v1/604f1767000a5a49386520f1/803e5fe9-2514-42bd-af91-69594f43584f/IMG_1220.jpeg Home - Make it stand out A front view of the massive subluxations in Julie’s cervical spine on turning her head to the right. https://images.squarespace-cdn.com/content/v1/604f1767000a5a49386520f1/1631035124797-HM1OZ46V9FRL4LUTYNNS/paypal-donate-button-1.png Home - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/604f1767000a5a49386520f1/1617200225735-93PGTGB1JQONGAMQ8KVN/123269645_177877353891295_3531226595409549141_o.jpg Home The specialist surgical theatre for hypermobile patients with CCI, AAI, AAS, and TCS. Centro Médico Teknon Barcelona, Spain. https://zebraheard.org/the-brainstem daily 0.75 2021-03-29 https://images.squarespace-cdn.com/content/v1/604f1767000a5a49386520f1/1617034244085-GLBCUV8QZET0QW680D3H/brain-stemdiagram.jpg The Brainstem https://images.squarespace-cdn.com/content/v1/604f1767000a5a49386520f1/1617034177222-RGIQ15PED6HK5V0J4FZ9/HumanBrainMidbrainLeftc4dmodel000.jpgB7F1D3BF-B14D-4B21-8AC4-1A8CD82B5BE6Large.jpg The Brainstem https://images.squarespace-cdn.com/content/v1/604f1767000a5a49386520f1/1617033049315-FWI06VBOKO6TH06XECZN/GettyImages-1092334754-fd0644493b3148288970e38fd26aead0.jpg The Brainstem https://images.squarespace-cdn.com/content/v1/604f1767000a5a49386520f1/1617034216688-VVS6SYL8E7P5KXI0BMSR/cnm2ob3wtpsvmhw1zynd.png The Brainstem https://zebraheard.org/julies-story daily 0.75 2025-06-16 https://images.squarespace-cdn.com/content/v1/604f1767000a5a49386520f1/1628099661043-I6JNHLTTBTTTWEAT8SQP/2017-07-06+10.41.49-4.jpg Julie's Story - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/604f1767000a5a49386520f1/1620126007147-FM1G3BWF508KY44MXL43/yh5tgrfed.gif Julie's Story https://images.squarespace-cdn.com/content/v1/604f1767000a5a49386520f1/1620126098498-3TF76T04JDAG5D54JSN6/yh5tgrfed.gif Julie's Story https://images.squarespace-cdn.com/content/v1/604f1767000a5a49386520f1/1620126251639-5JDD0HJYWD8YP5INBZEM/yh5tgrfed.gif Julie's Story https://images.squarespace-cdn.com/content/v1/604f1767000a5a49386520f1/1622025580028-GCQXISSV8LYZVQNVPZWF/yh5tgrfed.gif Julie's Story - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/604f1767000a5a49386520f1/1617455551424-C5U8X9ONM32DM43IJPFC/13124562_10154010462101480_4060819388305246038_n.jpg Julie's Story https://images.squarespace-cdn.com/content/v1/604f1767000a5a49386520f1/1626997314707-C051LJ3KKR7RI7ZGOMQG/49049890_10156696525491480_7905007468588040192_n.jpeg Julie's Story https://images.squarespace-cdn.com/content/v1/604f1767000a5a49386520f1/1620126365540-GWA2DWL28O4Q30AKWIBY/yh5tgrfed.gif Julie's Story https://images.squarespace-cdn.com/content/v1/604f1767000a5a49386520f1/390adebb-0d29-44f7-ab1a-d0baa8a72715/IMG_1222.jpeg Julie's Story - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/604f1767000a5a49386520f1/1619964419152-C5LGM6OX3RWD628YWR5T/10352769_10152347872036480_6977884910976413469_n.jpg Julie's Story Even at this young age Julie displayed and felt many symptoms of EDS. https://images.squarespace-cdn.com/content/v1/604f1767000a5a49386520f1/1f526ce5-6bb8-4b43-8aae-826684ed46b8/IMG_0429.jpeg Julie's Story - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://zebraheard.org/patient-stories daily 0.75 2022-04-10 https://images.squarespace-cdn.com/content/v1/604f1767000a5a49386520f1/1626932970506-K4IHOOLOVONV2FD6K1ZH/0_Woman-whose-neck-was-sliding-down-her-skull-has-life-changing-surgery.jpg Patient Stories - Print and Online Media Karen’s Story Karen’s Story II Karen’s Path on Facebook Erin’s Story Melanie’s Story Ylena’s Story Robyn’s Story https://images.squarespace-cdn.com/content/v1/604f1767000a5a49386520f1/1626934308314-3JHUHMTNBEOG1KGNMNKQ/IMG_0117.JPG Patient Stories - Television and Video Many former patients of Dr Gilete have produced video of their experiences with EDS, Craniocervical Instability, Atlantoaxial Instability, Atlantoaxial Subluxation, and Tethered Cord Syndrome. Dr Gilete had also published a lecture about the conditions he treats. Others have appeared on current affair and news programs. A selection of these are below. Many thanks to Karen who supplied me with a copy of her story which appeared on the BBC in the UK. Karen’s Story on the UK’s BBC News Maria-Marlena has her condition explained by Dr Gilete Meg’s surgical story Dr Viçenc Gilete's lecture on CCI, AAI, & AAS https://images.squarespace-cdn.com/content/v1/604f1767000a5a49386520f1/1626968889324-CNBIPVIDYXTDJDW9ETNU/07_oliver_ayats_institute_2019-min-1-scaled.jpg Patient Stories - Documentaries Maartje van Den Kerkhof and her fight for a new life through surgery with Dr Gilete. Maartje has a severe case of Ehlers Danlos Syndrome, a connective tissue disorder. The connective tissue in her body is too weak for it to function correctly. As it exists throughout the entire body, it affects everything. This surgery was performed to reduce her brainstem based symptoms which resulted from her spine being too weak to hold up her head and so her brainstem was crushed. It doesn’t solve all of her EDS symptoms as they originate in her connective tissue. It reduced her symptoms dramatically enough to give her a good quality of life. Ylena Green’s story on the Body Bizarre Series From the documentary series Body Bizarre, Ylena travels to Barcelona to undergo surgery with Dr Vicenç Gilete. The original poster of this video recorded it from a screen. Although a little unstable at times it is still fine to watch. It was the only version available which is in English and could be linked to a freely available video. Although many of Julie’s symptoms are similar to Ylena’s, she fortunately doesn’t have the severe gastrointestinal and waste excretion issues which Ylena has. Julie requires both of the surgeries featured in this documentary plus an additional surgery to stabilise more of her cervical spine, to repair damaged discs, and to remove sharp bony protrusions, osteophytes, which have grown inside her spine column. In Italiano En Français In English: Part 1 In English: Part 2 In English: Part 3 In English: Part 4 https://images.squarespace-cdn.com/content/v1/604f1767000a5a49386520f1/5ad08e61-6b0d-4bad-8933-d081f5844f27/IMG_0116.JPG Patient Stories https://images.squarespace-cdn.com/content/v1/604f1767000a5a49386520f1/b3bade86-5f0b-4e23-8bd6-213d0f9bef79/IMG_0117.JPG Patient Stories https://images.squarespace-cdn.com/content/v1/604f1767000a5a49386520f1/d375d0d9-be69-483e-84cc-3fad1e16e7fb/IMG_0118.JPG Patient Stories https://images.squarespace-cdn.com/content/v1/604f1767000a5a49386520f1/b7ab0372-b398-4502-815f-773e3a5dd68c/IMG_0119.JPG Patient Stories https://images.squarespace-cdn.com/content/v1/604f1767000a5a49386520f1/66881254-16b3-467f-9ce5-15b144c67b77/img_0529.jpg Patient Stories https://images.squarespace-cdn.com/content/v1/604f1767000a5a49386520f1/32324788-40c7-4532-abbe-9f7bc3decd9d/9D04C6FA-DDC5-44EE-8227-A803BA13D470.jpeg Patient Stories https://zebraheard.org/surgeries daily 0.75 2021-09-12 https://images.squarespace-cdn.com/content/v1/604f1767000a5a49386520f1/1625038190985-E1MJS88ZQ7QUA723A7Y7/IMG_0949.jpeg Surgeries - Make it stand out Setting the angle of the head prior to surgery. See Ylena’s surgical story with Dr Gilette on TLC here https://images.squarespace-cdn.com/content/v1/604f1767000a5a49386520f1/1625038029870-00TBF7YX3NRGT7CL4WBB/123269645_177877353891295_3531226595409549141_n.jpg Surgeries - Make it stand out The surgical suite at Centro Médico Teknon during a C0 (skull) to cervical spine procedure. Intraoperative imaging via CT plays a pivotal role in acquiring the precision necessary for a successful result. https://images.squarespace-cdn.com/content/v1/604f1767000a5a49386520f1/1625035590091-Q03QRFT1V75HE9L600C3/AntPlate_paoflb.jpg Surgeries - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/604f1767000a5a49386520f1/1624888905018-T5AKHP0GAJ4SBGEA8KGR/Mobi-C-Artificial-Cervical-Disc-480x325.png Surgeries - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/604f1767000a5a49386520f1/1625035497021-QHEJSLWNPCE50RA4MTY6/Cervical-Disc-Replacement.png Surgeries - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/604f1767000a5a49386520f1/1628833024411-76T53UA0RERP89ULTPWS/FFA364AD-679F-496C-A1AC-5C165BBC5297.jpeg Surgeries - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://zebraheard.org/cost daily 0.75 2024-11-29 https://images.squarespace-cdn.com/content/v1/604f1767000a5a49386520f1/1616381276337-3DPA0R7L3QHQPB3VBAWC/hn.jpg Cost - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/604f1767000a5a49386520f1/1629783432941-64NZE4ORJMJBGDS2HUGY/yhgiuefjodksl.jpg Cost - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/604f1767000a5a49386520f1/1631383206762-WBU147CCWY2XELE1BI7K/IMG_4977.JPG Cost - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://zebraheard.org/brainstem daily 0.75 2021-03-31 https://zebraheard.org/barcelona daily 0.75 2021-07-05 https://images.squarespace-cdn.com/content/v1/604f1767000a5a49386520f1/1625499810323-EWPGUYS9WWIBWVX5UNF9/7967d91f3b149e8c25b8f46f260e6e99_large.jpg Why Barcelona? - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://zebraheard.org/symptoms daily 0.75 2025-06-16 https://images.squarespace-cdn.com/content/v1/604f1767000a5a49386520f1/1626461244049-5ICY9FJU0SVWFDQZSBKS/13124562_10154010462101480_4060819388305246038_n.jpg Diagnoses & Symptoms - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/604f1767000a5a49386520f1/1631381007205-92E89PBIGWILTKJ12RFY/1360x200_banner2_cleaned_logo-VIII.gif Diagnoses & Symptoms - Make it stand out Click on the above image to read Jeff Wood’s editorial on why he seemingly recovered from what was thought to be a severe case of ME/CFS https://images.squarespace-cdn.com/content/v1/604f1767000a5a49386520f1/1630335879204-20B5HUQC9XWJNZSFQ35Y/2017-07-06+10.41.49-15.jpg Diagnoses & Symptoms - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/604f1767000a5a49386520f1/1626921582798-J8H06QK6U09384OTC1L2/10352769_10152347872036480_6977884910976413469_n.jpg Diagnoses & Symptoms - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/604f1767000a5a49386520f1/319913c3-e907-4fb4-a561-748b4c7415a6/Zebra+Heard-logo-5.png Diagnoses & Symptoms Ehlers Danlos information and images https://images.squarespace-cdn.com/content/v1/604f1767000a5a49386520f1/b6c8e954-5507-4314-bc90-92205d2d5c5f/0d5e3c94668734aa8806821c3272d71b.jpeg Diagnoses & Symptoms 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