Here are the frequently asked questions (FAQs) that were answered and discussed during the VES – Scleroderma Patient-centred Intervention Network (SPIN) meeting held on 13th May 2023.

The May 2023 Virtual Education Session, led by Dr. Brett Thombs, focused on the importance of annual tests for individuals with scleroderma and the work being done by SPIN to support patients worldwide.

These FAQs provide valuable insights into the significance of regular monitoring, specific tests, and the role of patient-centred interventions in managing scleroderma effectively.

Read on to find answers to common questions and gain a better understanding of how annual tests and SPIN’s initiatives can benefit individuals with scleroderma.

Frequently Asked Questions (FAQs)

1. Why are annual tests important for individuals with scleroderma?

Annual tests are important for monitoring the progression of scleroderma, detecting potential complications, and informing appropriate treatments.

They help healthcare professionals assess lung, cardiac, and kidney function, blood pressure, and pain levels to ensure comprehensive care for patients with scleroderma.

2. What is the role of pulmonary function testing in annual tests for scleroderma?

A pulmonary function test will assess how well your lungs work, mainly by testing your breathing.

Even if you don’t have symptoms, it’s important to get your lung function checked each year. If you do notice any changes, such as coughing or shortness of breath, inform your doctor who can arrange an earlier assessment.

3. How does cardiac function assessment contribute to annual tests for scleroderma?

Cardiac function assessment, typically performed using an echocardiogram, provides detailed information about the structure and functioning of your heart.

It helps monitor changes in heart function, including wall thickness and the risk of pulmonary arterial hypertension (PAH), which is common in scleroderma.

4. Why are kidney function tests necessary for individuals with scleroderma?

Kidney damage can occur without noticeable symptoms in scleroderma patients.

Regular blood tests can assess the levels of creatinine and estimate your glomerular filtration rate (GFR). Monitoring kidney function helps detect any early signs of kidney damage and allows for timely interventions.

5. How does monitoring blood pressure contribute to annual tests for scleroderma?

Regular blood pressure measurements are important for detecting potential complications, such as scleroderma renal crisis, which can affect kidney function.

Monitoring blood pressure helps manage any abnormalities and prevents further complications.

6. Why are pain assessments part of annual check-ups for scleroderma?

Pain is a common symptom of scleroderma, often caused by joint stiffness and skin thickening.

Assessing pain levels during annual check-ups helps healthcare professionals recommend appropriate interventions to alleviate discomfort and improve your quality of life.

7. Should I discuss sexual well-being and mental health with my doctor during annual tests?

Yes, it is important to address sexual well-being and mental health as they are closely linked to the psychological effects of living with scleroderma.

Even if your doctor doesn’t ask directly, don’t be afraid to tell them if you have concerns or questions.

8. How can I advocate for myself to ensure comprehensive care during annual tests?

You have the right to ask questions, seek additional tests if needed, and actively participate in your treatment plan.

If you believe that any specific tests are not being performed or if you have further concerns, discuss them with your doctor. 

Join the Scleroderma Patient-centred Intervention Network (SPIN) for more information and support

In addition to annual tests, staying informed about the latest research and developments in scleroderma care is essential.

The Scleroderma Patient-centred Intervention Network (SPIN), led by Dr Brett Thombs, offers valuable resources and programs for individuals with scleroderma.

Through initiatives like the SPIN-Chat and the SPIN-SSLED programs, you can connect with others, share experiences, and access support.

SPIN’s patient-centred approach involves patients as active participants and consultants in research, ensuring that programs and interventions address real-world challenges.

With international collaborations and ongoing research, SPIN strives to improve the quality of life for people living with scleroderma.

To learn more about annual tests for scleroderma and the ongoing work of SPIN, consider joining next month’s Virtual Education Sessions (VES).

These sessions provide an opportunity to connect with experts, ask questions, and gain further insights into managing scleroderma. Stay tuned for updates on the upcoming VES session and mark your calendars to participate.

Our future events will be listed on Eventbrite, so please register online. These events are free for everyone to attend. Please remember you will receive a new Google Meet link for every session. Along with receiving this via Eventbrite, we will also email it again on the morning of the session.

In the meantime, you can stay connected with SPIN and access their programs and resources by visiting their website and following them on social media. 

By staying informed and actively engaging in your healthcare, you can empower yourself and make informed decisions about your scleroderma care.

Remember, you are not alone in your journey with scleroderma. SPIN and other support networks are here to provide guidance, support, and valuable resources to help you live your best life with scleroderma.