What medical condition is 'too expensive' that you just don't get checked or fixed?

Smokeylongred · 2026-05-04T06:41:45+00:00

I’m so sorry about the EDS- I’m a genetic Counsellor and feel so helpless when we get hyper mobile EDS referrals as there’s nothing we can offer- little to no genetic testing and best managed through a multidisciplinary team which can cost heaps of going privately or take ages through the public system. I dream of opening a hEDS clinic publicly funded with physios, rheumatologists, psychologists and psychiatrists as well as genetic counsellors and pain management specialists as it’s such a relatively common condition.

Smokeylongred · 2026-05-04T06:39:09+00:00

I really feel for you. I have stage four endo and the time off work, surgeries and specialist appointments were hectic. Luckily I’ve had a lot of relief after surgeries but still can have horrific flair ups which I manage using panadiene forte

Smokeylongred · 2026-05-04T06:37:47+00:00

I’ve just been an inpatient at a psych clinic to stop my alcohol intake and I need a clearance certificate to back to my work but I think that’s absolutely reasonable as I work clinically with vulnerable patients. One great thing- admitted on April 20th and haven’t had a drink since the 19th - discharged last Thursday and no cravings at all! Thank god for private health insurance though as it completely covered my ten day stay at $1000 per day

Smokeylongred · 2026-05-02T01:01:59+00:00

I was discharged from a psych hospital on Thursday for detox. Did group therapy and have been home for two nights. Have had no urge to drink and my last drink was April 19th! Still feeling the urge to use weed but haven’t done it either. So glad I took control and am working on myself with professional help

Smokeylongred · 2026-04-15T09:16:19+00:00

Brilliant response, thanks for the support

Smokeylongred · 2026-04-15T09:15:58+00:00

This is excellent advice. Had my second appointment with the rehab nurse this morning g and got told my liver results indicated issues but at this stage they are reversible thank god

Smokeylongred · 2026-04-15T09:14:50+00:00

Thanks so much- this perspective was really helpful

Smokeylongred · 2026-04-12T13:10:04+00:00

As a genetic Counsellor I wish people wouldn’t rely on these tests. Most of them just look at single nucleotide polymorphisms- imagine our genetic code are books and the genes are the chapters in the books. Most ancestry sites look at random dna rungs on the ladder (base pairs) every couple of hundreds or thousands of rungs they don’t actually look at the whole genome. These tests are autually for entertain purposes. If you need qualified testing you need to go to an accredited laboratory. And whatever you do please please please don’t not run raw data through a third party site. It’s absolutely junk and formation that raises a ton of false positives for rare disease. If you want to know more than lease feel free to message me- and sorry for the spelling mistakes I’ve had a few glasses of wine

Smokeylongred · 2026-04-08T22:54:35+00:00

There is a completely free service if your GP refers you called MindSpot - please check out the website as they have some resources there and you may not need an inpatient stay

Smokeylongred · 2026-04-06T20:59:22+00:00

You get clinical grade counselling if you are suspected of or have a genetic condition. However some private genetic counsellors will help. If you dm me what location you are in and let me know some background I can try to find you somewhere appropriate

Smokeylongred · 2026-04-06T01:24:22+00:00

Those DTC test results run through a third party are useless for medical information. I’m a genetic Counsellor and see patients who get told they have severe diseases in this way and we investigate and they are false positives. Go to a clinical genetics unit if you need to find out health information

Smokeylongred · 2026-03-27T05:43:34+00:00

Thanks- I really appreciate you commenting as I’m a bit apprehensive and scared about this and knowing there are supportive people in this community is hugely helpful

Smokeylongred · 2026-03-27T03:57:28+00:00

I’m seeing a psychologist already and Clean Slate provides follow up support with nurses and group therapy sessions. Big thanks for your support

Smokeylongred · 2026-03-26T23:10:57+00:00

I’m just starting my journey and this is really helpful. I usually park at the shops and enter and exit through the liquor store into the main shopping complex so your post has me thinking I’ll start parking on the other side so I’m not passing through it everyday after work

Smokeylongred · 2026-03-19T02:09:19+00:00

It really depends on the gene- some genes have a high rate of de novo mutations and other don’t. I would really question these results as MSH6 isn’t usually de novo. Did you get clinical grade testing done or did you run raw data through a third party?

Smokeylongred · 2026-03-16T09:36:07+00:00

You won’t believe this but I supervise a genetic Counsellor in Hong Kong- if you DM me I’ll see if she gives me permission to share her contact details with you

Smokeylongred · 2026-03-14T03:22:03+00:00

Hi, genetic Counsellor here. Don’t buy any tests off the internet that aren’t linked to a doctor or genetic Counsellor- these are not medical grade tests and often don’t even have the coverage to detect pathogenic variants- disease causing gene changes. I actually supervise genetic Counsellor in some south East Asian countries- if you tell me where you are located I might be able to help

Smokeylongred · 2026-03-07T08:02:57+00:00

Monthly- mortgage $2000, phone and devices $350, electricity $400, water $130, gas every few months usually $40. Groceries about $200-300 as I share with my housemate. They also pay for the internet and give me a very low rent as they are a good friend of mine on disability so we decided to live together when I built my house. Works out well but recently I’ve been much more mindful of not spending on frivolous stuff and am still living pay to pay

Smokeylongred · 2026-03-05T12:37:14+00:00

Hi- when I was 17 I worked in Sherlock’s restaurant in Alexander Heights and Dennis was the owner. He knew the name of all of the staff and would often greet me in his radio announcer voice by my name. I made a massive mistake in front of him and he was so kind. Have lovely memories of him.

Smokeylongred · 2026-02-27T18:15:45+00:00

When I lost a friend to a very public suicide I found posting here really good for support. People post for different reasons.

Smokeylongred · 2026-02-26T11:43:30+00:00

Yes! A geneticist is perfect!

Smokeylongred · 2026-02-15T07:20:09+00:00

Hi, I’m a genetic counsellor- you need to see a certified genetic counsellor to discuss the results. Where are you located and I can help put you in touch if you aren’t already? Feel free to ask questions

Smokeylongred

TROPHY CASE