Information Page
Wecome to my information page! I've added some links to other sites where you can learn more about each of the disorders that many of us EDS zebras face, as well as service dog information. With EDS comes many comorbid disorders. This is in no way a full list of possible comorbidities, but I hope that you find these helpful. If you find that any of these links have stopped working please let me know.
Ehler's Danlos Syndrome
Mast Cell Activation Syndrome
https://www.youtube.com/watch?v=tQbMGfEMVx4 - Understanding Mast Cell Activation Syndrome
https://www.youtube.com/watch?v=RS8M8v0MtP0 - EDS & it's fellow traveler -MCAS
Dysautonomia/POTS
https://www.youtube.com/watch?v=i_mmnauho7g - Video of Dr Grubb explaining POTS
https://www.youtube.com/watch?v=aqOYC7E5lRo - Dr Grubb
https://www.youtube.com/watch?v=ch6ipV3M4yo - What is POTS
Gastroparesis
https://www.ehlers-danlos.org/information/gastrointestinal-problems-in-hypermobile-ehlers-danlos-syndrome-and-hypermobility-spectrum-disorders/ - How EDS affects the digestive system
https://www.youtube.com/watch?v=SjEtn1-rYBs - Understanding gastrointestinal involvelment with EDS
https://www.katefarms.com/?gclid=EAIaIQobChMIqpz864v96wIV6h-tBh1GrACnEAAYASAAEgI1zfD_BwE - This is what I personaly use as my source of nutrition due to digestive issues & MCAS. Note; While helpful for many, others may have allergies to any ingredient so always speak with your doctor & test your body's tolerance carefully.
Vocal Cord Dysfunction
Vocal cord dysfunction is often associated with dysautonomia. Given the central role of the vagus nerve in autonomic and vocal cord dysfunction.
https://www.youtube.com/watch?v=cKHd935oRBg - VCD Exercise to help stop an attack
Tracheomalcia
Chiari Malformation
Dysphagia
https://academic.oup.com/rheumatology/article/47/6/746/1785361 - Dysphagia and other manifestations of oesophageal involvement in the musculoskeletal diseases
Cranialcervical Instability
CSF Leak
Tethered Cord
Tarlov Cyst
Neurological & Spinal Manifestations in EDS
Tethered cord syndrome (TCS) is a condition that can be present in EDS, in which the spinal cord is attached to surrounding tissue in a way that creates elongation and tension of the nervous tissue, leading to low back pain, neurogenic bladder, lower body weakness, and loss of sensation.
Whether you are searching for a diagnosis, or trying to better understand one, I hope that you find these links helpful.
ADA basic laws
Purchasing an already trained service dog is highly expensive unless going through a non-profit who may donate their dogs. These free agencies typically have a very long waiting list that can take several years. Using a local personal trainer can be much cheaper. You can also go through a 12 week training course at pet stores such as Petco to help you teach the basics, then you can continue service dog training from there. The nice thing about these 12 week courses is that the Canine Good Citizen (CGC) test & certificate is included. This certificate doesn't make it a service dog, but rather shows he/she has been properly trained basic obedience & manners. If you choose to self train, there is many instructional videos on youtube as well as service dog groups that can offer advise.
Service Dogs
To qualify for a service dog you
MUST have a diagnosed physical, or psychiatric disability such as PTSD.
How to behave/react around a service dog. https://www.dailypaws.com/dogs-puppies/meeting-service-dog
While the ADA doesn't recognize service dogs in training for public access many state laws do recognize & allow them the same access as fully trained. However, a SDIT must already be fully poty trained, know basic commands, & not aggressive. ADA laws trump state laws with the exception of when the state law allows greater flexibility to the service dog team
& in that case state law wins.
CERTIFICATION AND REGISTRATION
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Q17. Does the ADA require that service animals be certified as service animals?
A. No. Covered entities may not require documentation, such as proof that the animal has been certified, trained, or licensed as a service animal, as a condition for entry.
There are individuals and organizations that sell service animal certification or registration documents online. These documents do not convey any rights under the ADA and the Department of Justice does not recognize them as proof that the dog is a service animal.
Q5. Does the ADA require service animals to be professionally trained?
A. No. People with disabilities have the right to train the dog themselves and are not required to use a professional service dog training program.
(Note; Self trained dogs must still be held to the high level of training that a professionally trained dog would be.)