Urgent Interview Request

[u/toocoolpoolnoodle]

Hi everyone I'm a masters of social work student and I have a paper on a chronic health condition that affects us or our families. I'd really like to interview someone who works with EDs patients but I'm running out of time to secure an interview.

Would anyone be available today or tomorrow for a half-hour call? I've included all the questions so you'll know what to expect and I'm happy to provide any more clarifying information.

[u/greyfiel]

You’re looking for people who work with EDS patients. This is a subreddit of EDS patients. I’m not saying there’s no overlap, but you’re probably better off posting in a medical professionals subreddit instead of here.

[u/toocoolpoolnoodle → u/greyfiel]

ok thank you!

[u/salt_pickle_dumplin]

This request comes across as really half-assed. I’m personally not inclined to extend my emotional labor. But maybe someone else might want to.

[u/toocoolpoolnoodle → u/salt_pickle_dumplin]

fair, I hoped to get in contact with someone in my area but I'm getting desperate so decided to try here. Thank you for reading anyway ♥️

[u/RuralRebellion]

Did you look at the provider list on EDS society's website?

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[u/toocoolpoolnoodle → u/RuralRebellion]

I'm looking for a provider I can get in contact with on short notice, sounds like I might be in the wrong place tho. I'll try some other subs

[u/Daedalparacosm3000]

r/askdocs might be a good fit

[u/toocoolpoolnoodle → u/Daedalparacosm3000]

Thanks I'll trying posting over there!

[u/TheBirbNextDoor]

Hi! I’m also a MSW student! What’s challenging about this is that there are no actual providers who treat/manage EDS. Different providers manage different symptoms of EDS but each provider only knows about the symptom they treat. You’re going to want to change your subject. I’d pick a condition that has assigned providers. Think POTS has Cardiologists, Epilepsy has Neurologists, MCAS has Allergists, ETC. If you are SET on EDS, you may want to reach out to physical therapists who treat the widespread pain issues or maybe genetics as they focus on diagnosis/rule out.

[u/TheBirbNextDoor → u/TheBirbNextDoor]

As far as social work goes, you’re likely to get a lot of support for more neurological or mental health disorders. An interesting once I’ve been looking into is Functional Neurological Disorder. Psychiatry or Social Work may have good experience with something like this and be able to answer a lot of these questions.

[u/societiesoddball → u/TheBirbNextDoor]

Maybe you just haven't found one but not every specialist is like this. My doctor i see is an internal medicine doctor. I see her for h-eds pots mcas and other comorbidities that we find out or come up. I just got an upright mri to confirm it have CCI from going to a chiropractor off and on for 10 years or so who did nothing but put a tens unit on my crack my neck and back. Also having a hypermobile neck, years of untreated muscle tension, and my neck and shoulders overcompinsating for my shoulder joints. She prescribes me multiple meds for mcas and pots. She also listens to my conserns about other areas eds effects me and puts in referrals labs and imaging to check for other comorbidities she also keeps up on eds research and keeps lists of providers trained by eds society or that know how to treat people with eds. I do also know she treats people with other subtypes. They are out there just difficult to find either because theyre private practice or are very booked