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PHOTO GALLERY
Infographics, images, and scans for vascular Ehlers-Danlos
What is Vascular Ehlers-Danlos Syndrome?
Here are some facts about vEDS. Feel free to share this with new vEDS patients, families and friends to help spread awareness of the disease!
Keys to Creating a vEDS Care Team
Some helpful hints to get your vEDS care team up and running. This infographic was made by FIGHT vEDS, the information used to create it was from the vEDS Collaborative conference in Seattle Washington July 2018.
Ways to Improve Outcomes
There are ways to improve outcomes in vascular EDS. Talk your physician about some of the ideas listed here.
Characteristic Facial Features in vascular Ehlers-Danlos Syndrome
These images show the spectrum of facial features which can be seen in vEDS. They highlight the fact that the severity of your underlying vEDS does not always correlate with your facial features. In other words, having (or not having) certain facial features does not necessarily help you predict how severe the disease is. Remember, vEDS is on a 'spectrum'. While all vascular EDS patients have the same disease, some people have more severe cases than others.
Picture A: a man with characteristic vEDS facial features including proptotic eyes (eyeballs are pushed forward more than normal), long and thin nose, minimal subcutaneous facial fat and a triangular shaped face.
Picture B: A young female with mildly proptotic eyes, and a long thin nose
Picture C: a man with down slanting palpebral fissures (the elliptical, open space between the eyelids). He also has characteristic facial findings of attached pinna (attached ear lobes) and thin lips.
Picture D: A female with a long thin nose, but otherwise normal facial features.
Source:Shalhub S, Black JH 3rd, Cecchi AC et al: Molecular diagnosis in vascular Ehlers-Danlos syndrome predicts pattern of arterial involvement and outcomes. J Vasc Surg 2014; 60: 160-169
Picture A: a man with characteristic vEDS facial features including proptotic eyes (eyeballs are pushed forward more than normal), long and thin nose, minimal subcutaneous facial fat and a triangular shaped face.
Picture B: A young female with mildly proptotic eyes, and a long thin nose
Picture C: a man with down slanting palpebral fissures (the elliptical, open space between the eyelids). He also has characteristic facial findings of attached pinna (attached ear lobes) and thin lips.
Picture D: A female with a long thin nose, but otherwise normal facial features.
Source:Shalhub S, Black JH 3rd, Cecchi AC et al: Molecular diagnosis in vascular Ehlers-Danlos syndrome predicts pattern of arterial involvement and outcomes. J Vasc Surg 2014; 60: 160-169
Translucent Skin
Images of a patient with vascular Ehlers-Danlos syndrome. Note the thin, 'translucent' skin which allows you to see the underlying veins on the chest.
Aneurysm in vEDS
Imaging of an internal carotid artery aneurysm in a vascular EDS patient
Splenic Artery Aneurysm and Coil Embolization
Picture A: a 2.2cm splenic artery aneurysm (the artery going to the spleen) in a 32 year old vEDS patient picked up on routine annual imaging.
Picture B: Treatment of the splenic artery aneurysm with coil embolization. This was done as an elective procedure. To learn more about surgery in vEDS visit our Surgical Management Page.
Picture B: Treatment of the splenic artery aneurysm with coil embolization. This was done as an elective procedure. To learn more about surgery in vEDS visit our Surgical Management Page.
Easy Bruising in vEDS
Ecchymosis is the medical term for bruising. In vEDS patients, easy bruising is noted. This can happen after little to no trauma.
A bruise is a collection of blood underneath the skin. It results from blood (which should be within blood vessels) findings its way outside of the blood vessels and into the surrounding tissue.
While there are many causes of easy bruising, it is the effect of vEDS on the blood vessels themselves that causes easy bruising in vascular EDS.
Image Source:
http://www.geneticdisordersuk.org/geneticdisordersdatabase/entry?name=Vascular%20Ehlers-Danlos%20Syndrome
A bruise is a collection of blood underneath the skin. It results from blood (which should be within blood vessels) findings its way outside of the blood vessels and into the surrounding tissue.
While there are many causes of easy bruising, it is the effect of vEDS on the blood vessels themselves that causes easy bruising in vascular EDS.
Image Source:
http://www.geneticdisordersuk.org/geneticdisordersdatabase/entry?name=Vascular%20Ehlers-Danlos%20Syndrome
Renal Angiogram of a vEDS patient
This is a scan looking at the left renal artery (the artery which carries blood to the left kidney). The white arrow points to a dissection along the artery. To the right of this you can notice the outline of the kidney (shaped like a bean). Noticeable in the kidney are 'cortical infarcts'. These are areas of the kidney which have lost their blood supply and are now dead tissue as a consequence of the dissection.
Skin Manifestations of vEDS
Picture A: Thin, translucent skin with visible veins on the lower back of a vEDS patient
Picture B: A widened post-operative scar following an abdominal surgery (for abdominal aortic aneurysm). Widened scars can commonly be seen in vEDS after surgery or injury to the skin.
Source: Shalhub S, Black JH 3rd, Cecchi AC et al: Molecular diagnosis in vascular Ehlers-Danlos syndrome predicts pattern of arterial involvement and outcomes. J Vasc Surg 2014; 60: 160-169
Picture B: A widened post-operative scar following an abdominal surgery (for abdominal aortic aneurysm). Widened scars can commonly be seen in vEDS after surgery or injury to the skin.
Source: Shalhub S, Black JH 3rd, Cecchi AC et al: Molecular diagnosis in vascular Ehlers-Danlos syndrome predicts pattern of arterial involvement and outcomes. J Vasc Surg 2014; 60: 160-169
Distribution of vascular findings
This picture demonstrates the location of vascular findings on a particular radiology study published in 2007. The 'events' included aneurysms, dissections and occlusions. DTA = descending thoracic aorta, IMA = inferior mesenteric artery, SFA = superior femoral artery, SMA = superior mesenteric artery.
Hematoma formation in a vascular Ehlers-Danlos syndrome patient
This image shows a CT scan of the abdomen. The large circular structure at the top of the picture is a hematoma. A hematoma is a collection of blood (often clotted) which has formed outside of the blood vessels. In this case it was due to a rupture of the patient's left epigastric artery. This led to a bleed which caused blood to pool within the lining of the abdominal wall. Click the link below to view the source and full article.
Aneurysm in a vEDS patient
This image shows the formation of an aneurysm along the left forearm in a vEDS patient. The white arrow points to the aneurysm, which is located along the ulnar artery.
'Willis' By The Translucent One
This cartoon was created by the author of the blog The Translucent One. Willis is a cartoon she created after her vascular surgeon drew her a picture of the Circle of Willis-- an important series of arteries that supply blood to the brain and brainstem which can sometimes suffer from aneurysms or dissections in vEDS. You can follow her vEDS story on her blog, or her podcast in which she discusses her diagnosis and also speaks with other vEDS patients!
CT Angiogram (CTA) in a vEDS patient
This is a CT angiogram of a 22 year old patient with vEDS. It is a 3D reconstruction of the patients anatomy. The thin white arrow points to a dissecting aneurysm of the right common iliac artery. The thick arrows point to a right hypogastric artery and left common iliac artery. Follow the link below to read the full article.
MR angiography in a vEDS patient
This is an MR Angiography (MRA) of a gentleman with vascular Ehlers-Danlos syndrome. The white arrow points to a dissection along the celiac artery, which is the first major blood vessel coming off of the aorta as it enters the abdomen. The celiac artery eventually splits into arteries responsible for carrying blood to the stomach (left gastric artery), spleen (splenic artery) and liver (common hepatic artery).
CT Angiography (CTA) in a vascular EDS patient
This is a CT Angiography (CTA) of the abdomen in a young woman with vEDS. The picture is a 3D reconstruction of her arteries. The white arrow shows a 1.2cm aneurysm along the celiac artery. Follow the link below to view the source and full article.
CT Angiography in a woman with vascular Ehlers-Danlos syndrome
This is a CTA of the pelvis of a woman with vEDS. The aorta is the largest blood vessel in the body. It is located at the top of this picture. It then splits into two separate arteries called the right and left common iliac arteries. In this picture you can see aneurysms along both of the common iliac arteries. Follow the link below to view the source and full article.
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