Having been diagnosed with kEDS-PLOD1, I've found the journey to be quite isolating. Because our symptoms are so niche compared to the more common Ehlers-Danlos types, it can be hard to find relatable support. I would love to know if there are other users on here living with kEDS-PLOD1 or kEDS-FKBP14.
Hey everyone!
Because Kyphoscoliotic Ehlers-Danlos Syndrome (kEDS) is one of the rarest types of EDS, it often gets lost in the broader conversation. I wanted to share a quick awareness reminder about this specific type, as our clinical challenges and medical management are often quite distinct from hEDS or vEDS.
As a quick refresher or for those who don't know, kEDS is a progressive, autosomal recessive type typically confirmed via genetic testing (mutations in the PLOD1 or FKBP14 genes). Key clinical hallmarks include:
If you are formally diagnosed with kEDS, or are currently going through the clinical/genetic evaluation process for it, you are so welcome to join r/KyphoscolioticEDS.
For context, this is the same individual who wants their boyfriend to train a service dog but has no money for a service dog or for bills, including expenses for breeding, veterinary care, or suitable equipment. They also do not have a diagnosis for their seizures.
Currently, they claim that their previous diagnosis of psychogenic nonepileptic seizures (PNES) is incorrect because their cat alerts them to these seizures, suggesting that they may actually be epileptic.
Move aside, neurologists! Dr Mittens, the domestic shorthair, is here.
When people in public ask what his trained tasks are, the poster claims that he "alerts and responds" during medical events. The fact that bystanders are questioning the dog's tasks makes me suspect the owner is just dressing up a tear-licking pet in service gear to let him into non-dog-friendly places. Those are barely "tasks," and they can easily be caused by the dog simply liking the taste of salty tears, being poorly trained, or being a "good boy".
This teenager hasn't discussed getting a service dog with their parents or therapist yet, but they are already hyper-focused on how they will react to it. Their alleged diagnosed conditions include Generalized Anxiety Disorder (GAD), Polyendocrine Metabolic Ovarian Syndrome (PCOS/PMOS), Attention Deficit Hyperactivity Disorder (ADHD), and mild Postural Orthostatic Tachycardia Syndrome (POTS). They claim that doing "things" around the house, and having ADHD prevents them from setting or responding to phone alarms for their birth control, metformin, and ADHD medications. Frankly, I am not sure how they expect a service dog to solve an inability to manage medication alarms, nasal issues during exertion, or even their anxiety.
Training a regular pet dog absolutely does not make someone a certified service dog trainer. True medical alert and response training is incredibly complex, and trying to cut corners with a backyard breeder puppy when funds are already low is a recipe for medical and financial disaster
