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Hughes Syndrome and the NDIS

Navigating everyday life with a disability can be challenging, especially when the condition fluctuates and lacks widespread awareness. Hughes Syndrome, also known as Antiphospholipid Syndrome (APS), is one such condition. For those in Australia living with Hughes Syndrome, the National Disability Insurance Scheme (NDIS) offers a potential lifeline. As a proud provider of disability support services in Melbourne, Beyond Health Services is committed to helping individuals manage and thrive with their disabilities.

Understanding Hughes Syndrome

Hughes Syndrome is an autoimmune disorder that increases the risk of blood clots. It affects the body’s immune system, causing it to mistakenly attack certain normal proteins in the blood. While it can occur on its own, Hughes Syndrome is sometimes associated with other autoimmune disorders such as lupus.

Key Symptoms and Traits

Individuals with Hughes Syndrome may experience a range of symptoms, which can include:

  • Blood clots in both arteries and veins
  • Stroke or mini-stroke
  • Deep vein thrombosis (DVT)
  • Recurrent miscarriages or complications during pregnancy
  • Migraine headaches
  • Fatigue and cognitive difficulties

Due to its variable symptoms and potential for severe complications, living with Hughes Syndrome can be unpredictable and stressful.

Supporting Someone with Hughes Syndrome

Support for individuals with Hughes Syndrome should focus on comprehensive health management and addressing lifestyle factors. Here are some strategies to consider:

  1. Medical Management: Regular consultations with healthcare providers, including specialists such as rheumatologists and haematologists, are crucial. Medication might include blood thinners or anticoagulants to reduce clot risk.
  2. Healthy Lifestyle: Encouraging a balanced diet, regular exercise, and avoiding smoking can help manage symptoms.
  3. Monitoring and Emergency Planning: Keeping track of symptoms and having a plan for emergencies (e.g., stroke symptoms) is essential.
  4. Psychosocial Support: Given the potential for stress and anxiety, psychological support or counselling might benefit those affected.

The Role of the NDIS

The NDIS offers support to Australians under the age of 65 who have a permanent and significant disability. While Hughes Syndrome isn’t always disabling, its impact varies among individuals, and some may qualify for NDIS support.

How the NDIS Can Help

For those whose daily activities are significantly affected by Hughes Syndrome, the NDIS can provide funding for:

  • Medical Equipment and Aids: Such as mobility aids if clots have affected physical ability.
  • Personal Care and Support: Assistance with daily self-care activities.
  • Transport Services: Support for transportation to medical appointments or community engagement.
  • Therapies: Access to speech, occupational, or psychological therapies as needed.

Providers like Beyond Health Services in Melbourne can assist with developing personalised support plans through the NDIS, ensuring comprehensive care and management tailored to individual needs.

Services Required and Our Support

Depending on the severity and range of symptoms, a person with Hughes Syndrome may require:

  • Case Management: An integrated approach to coordinating care and support.
  • Community Access Programs: Promoting social interaction and participation.
  • Crisis Support: Assisting in managing emergencies related to clotting events.

At Beyond Health Services, we are committed to offering personalised and compassionate support services that cater to varying needs. Our team works passionately to ensure you or your loved ones receive the best possible care and support through our in-depth understanding and experience in disability services.


For more information about how we can assist you or if you wish to discuss eligibility and available services, do not hesitate to reach out to us:

Visit Beyond Health Services to learn more about our offerings and how we can tailor our services to suit your needs.

Together, let’s create a supportive environment for all individuals living with Hughes Syndrome in Australia.


Note: Medical information provided is for informational purposes only and should not substitute professional medical advice. Always consult healthcare professionals for diagnosis and treatment options.

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Additional Resources

Ask Izzy

Find nearby support services.

Australian Federation of Disability Organisations (AFDO)

Advocacy for people with disability.

Beyond Blue

Mental health support.

Carer Gateway

Resources for carers.

Carers Australia

National peak body for carers.

Disability Gateway

Support for people with disability.

Head To Health

Mental health resources.

Medicare

Medicare health coverage.

NDIA

National Disability Insurance Agency.

NDIS Commission

Regulation and quality assurance.

NDIS Official Website

Disability support info.

National Disability Services (NDS)

Peak body for disability service providers.

Services Australia

Centrelink services.

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