Can’t think of the right questions for your Doctor?

Navigating a doctor’s visit for your HHT (Hereditary Hemorrhagic Telangiectasia) can be overwhelming, and it’s not always easy to remember the questions you want to ask.

To make your healthcare journey smoother, we’ve compiled a list of essential questions for you to consider.

Whether you’re seeking clarity about your condition, exploring treatment options, or simply want to better understand your HHT, these questions will empower you to engage in meaningful conversations with your healthcare provider.

Take the uncertainty out of your appointments and advocate for your health with confidence.

Feel free to open this page during your consultation and ask any of the following questions that may be relevant to you.

QUESTIONS FOR YOUR Doctor.

Diagnosis and Symptoms:

•  How is HHT diagnosed, and what are the common symptoms?
• Are there any specific signs or symptoms I should be vigilant about?

Treatment and Management:

• Are you aware of the International guidelines for HHT? www.hhtguidelines.org. 
• How can I alleviate or manage the symptoms associated with HHT effectively?
• Are there medications or therapies that can help with symptom relief or prevention of any complications? eg: Bio-degradeable nasal tampons for a bad nosebleed? Bactroban/Naseptin for keep nasal passage moist? Petroleum-free Vaseline? What is your advice on Blood thinners/ Vaso-dilators, etc…What are the best options when they are critical in preventing clots?
• What are the available treatment options for managing HHT?
• Can you create a personal care plan for me eg: regular monitoring of blood levels, to be  checked 3-4 weeks, or as required, to include: haemoglobin/iron/ferritin/transferrin/Vit B12/ Magnesium/Folate….Any others that I should be aware of?
• Could my high cardiac output be related to my liver? Can you arrange a Doppler scan for my liver?
• If I have confirmed PAVMs will you note my files about the need for Micron 0.22 filter for any subsequent IV therapies?
• Is my Restless Legs Syndrome related to my HHT? Could I be anaemic?

Specialists and Referrals:

• Should I see a specialist for HHT, and if so, what type of specialist do you recommend?
• Can you recommend any HHT centres or experts for further evaluation or management?

Genetic Counselling and Testing:

• Is genetic testing recommended for HHT, and what information can it provide?
• Are there genetic counselling services available to help me understand the hereditary aspects of HHT and implications for my family?

Prognosis and Long-Term Outlook:

• What can I expect in terms of the long-term progression and prognosis of HHT?
• Are there factors that may affect the severity or progression of the condition eg: Heavy manual labour? Working in dry/humid office space? etc…

Preventive Measures:

• Are there any preventive measures or lifestyle changes I should consider to manage HHT effectively?
• Are there activities or behaviours I should avoid to minimise the risk of complications?   

Family Screening:

• • Should my family members be screened or tested for HHT, and if so, at what age should this occur?
  • Are there resources or guidelines available for informing my family about HHT?

  Support and Resources:

  • Can you recommend any support groups or organisations specialising in HHT that I can connect with for additional information and support?
  • Are there educational materials or reliable online resources you suggest for learning more about HHT?
  • Are you happy for me to share HHT info with you?
  • Are you happy to write a letter on my behalf to the Medical Director of my Health Insurance provider, if required?

  These questions will help you gain a better understanding of your condition, treatment options, and how to manage HHT effectively with the guidance of your health care professional.