Helen van Niekerk

Adores pugs 🇿🇦

[Helen Zille @helenzille]

@KhuselaS @PostofficeSa @Commza Sweetness, refuse removal is a local government. Ask the ANC in Modimolle why they are not removing refuse. Since when do I have any responsibility for service delivery in Modimolle. I am not the candidate there. Try harder

[Helen van Niekerk @helenvn888]

@STHGibbs South African soprano Pretty Yenda gives a pitch perfect rendition of Amazing Grace at Notre Dame today. Gustavo Dudamel contacted the Orchestre Philharmonique de Radio France during Pretty’s performance.
There I fixed it for you …

[Helen van Niekerk @helenvn888]

T5: The use of apps, telemedicine, and real-time data sharing can go a long way to streamline the diagnostic process #DiagnosticDelay #DSSATalks

[Dysautonomia Support South Africa @DysautonomiaZA]

T5:How can technology and innovation bring patients and medical professionals together in this fight against diagnostic delay? #DSSATalks

[Vanessa Carter AMR 🇬🇧🇿🇦 @VCarterAMR]

@DysautonomiaZA T4: I think patient advocates seeking out ways to contribute towards policymaking is key. In South Africa, there is a huge shift to be made in that area, but our voices need to be included #DSSATalks

[Helen van Niekerk @helenvn888]

@_FaceSA @DysautonomiaZA Cannot agree more

[Helen van Niekerk @helenvn888]

T4: Open and unbiased communication between Healthcare providers and patients can go a long way to beat #DiagnosticDelay #DSSATalks

[Dysautonomia Support South Africa @DysautonomiaZA]

T4:How can patients and healthcare professions work together to cope with these systemic factors of the healthcare system that contribute to diagnostic delay? #DSSATalks #DiagnosticDelay

[Helen van Niekerk @helenvn888]

T3: 2/2 But, the biggest stumbling block to my daughter getting a diagnosis was the deep seated belief in medicine that women and girls symptoms are “all in their heads” #DSSATalks #DiagnosticDelay

[Helen van Niekerk @helenvn888]

Although William Osler told physicians, “Listen to your patients, he is telling you the diagnosis,” in my experience, most don’t #DSSATalks #DiagnosticDelay

[Dysautonomia Support South Africa @DysautonomiaZA]

T3: In your opinion, how do the structure, policies, and practices of the healthcare system contribute to diagnostic delays? #DSSATalks

[Helen van Niekerk @helenvn888]

The emotional trauma can be devastating causing patients to completely give up on the medical system #DSSATalks

[Aaliya Essack @AaliyaE03]

T2:2/ I needed to leave South Africa to get help with my EDS diagnosis and find a treatment plan. I saw so many drs who didn’t listen, which caused untold emotional trauma leading to medical PTSD #DSSATalks

[Aaliya Essack @AaliyaE03]

T2:1/ Personally it took 18yrs to find a diagnosis of EDS with co-morbids: multiple types of dysautonomia, intracranial hypertension, spinal instability & more. The delay caused irreparable physical damage #DSSATalks

[Aaliya Essack @AaliyaE03]

T2:2/ I needed to leave South Africa to get help with my EDS diagnosis and find a treatment plan. I saw so many drs who didn’t listen, which caused untold emotional trauma leading to medical PTSD #DSSATalks

[Aaliya Essack @AaliyaE03]

T2:3/ Professionally as co-founder of @DysautonomiaZA I’ve seen many patients who had the same experience I did. The delays caused irreparable physical, psychological, emotional and financial harm that is hard to fully measure #DSSATalks

[Aaliya Essack @AaliyaE03]

T2:4/ It is impossible for patients when their basic medical aid is exhausted and there’s still no diagnosis. This doesn’t even take into account tests/medication not covered or potentially having to leave the country for help #DSSATalks

[Helen van Niekerk @helenvn888]

T2: We had a harrowing 8–9 year diagnostic trek with my daughter that started when she was 11. It is something I would not want any other parent or child to experience #DiagnosticDelay #DSSATalks

[Dysautonomia Support South Africa @DysautonomiaZA]

T2: What personal or professional experiences with diagnostic delays have shaped your understanding? #DSSATalks

[Helen van Niekerk @helenvn888]

@CraigN @DysautonomiaZA The number of doctors complex patients need to see to get a diagnosis is insane. #DSSATalks #DiagnosticDelay

[Helen van Niekerk @helenvn888]

@AaliyaE03 Absolutely and don't we all feel that weight #DSSATalks

[Helen van Niekerk @helenvn888]

T1: #DiagnosticDelay is the time delay between when a person who is ill first consults a doctor about the illness and when that person gets a name and an explanation for their symptoms #DSSATalks

[Dysautonomia Support South Africa @DysautonomiaZA]

1. T1: How would you define diagnostic delay? #DSSATalks

[Helen van Niekerk @helenvn888]

Hi. I am Helen and I am a founding member of Dysautonomia Support South Africa. I am a care giver to my daughter who lives with Dysautonomia and other underlying conditions #DiagnosticDelay #DSSATalks

[Dysautonomia Support South Africa @DysautonomiaZA]

Good evening everyone and welcome to Dysautonomia Support South Africa first Community Conversation here on X ! Please introduce yourself and remember to use #DSSATalks in your tweets.

[Dysautonomia Support South Africa @DysautonomiaZA]

One day to go! Join us for a community conversation here on X and have your say about Diagnostic Delay.
Full details here: https://t.co/sxMZ9ohoXM

[Hannah Davis @ahandvanish]

Like HIV/AIDS, the best thing we can do is encourage new biomedical researchers into the field of #LongCovid and support the ones already in the field doing amazing work.

The worst thing to do is alienate exceptional researchers & demotivate people from joining the field.