Managing Your Emotions Can Save Your Heart

We often think of the heart and brain as being completely separate from each other. After all, our heart and brain are located in different regions of our body, and cardiology and neurology are separate disciplines.

They are typically around 12-15 inches, or roughly 30-38 centimeters apart and are however in constant communication influencing each other through the autonomic nervous system and the vagus nerve. 

This bidirectional communication, often referred to as the heart-brain connection, impacts not only our physical health, and cognitive function, but also our emotions, and overall well-being.

You see, these two organs are intimately connected, and when our emotions adversely affect our brain, our heart is affected as well. And many Scleroderma patients experience bouts of depression and struggle emotionally every day, with stress, anger, anxiety, worry, and problems with self-esteem.

Depression along with these strong emotions are caused by, among other things, challenging home and work routines, due to the toll that Scleroderma can take on one’s body, unsupportive family and friends, and a lack of supportive social interaction.

There may well be a link between stress and scleroderma as “Physical and psychological stress has been implicated in the development of autoimmune disease.” https://pubmed.ncbi.nlm.nih.gov/18190880/ “Chronic stress can make the immune system less effective at regulating itself, leading to misdirected attacks on healthy tissues.” https://www.mysanitas.com/en/blog/link-between-stress-and-autoimmune-flare-ups

Stress is the body’s response to any experience that causes tension, whether physical, psychological, or emotional. It is a survival mechanism that helps us react quickly in dangerous situations.

The thing is, there are two kinds of stress that impact our brain. Helpful stress (also known as eustress) can assist us with getting things done by helping us to focus our attention. Unhelpful stress (distress), on the other hand, can be so severe that it can lead to fatigue and heart disease.

Therefore it is important to control our worry and stress, not just because we’ll worry less and feel better, but because less worry means less stress for our heart.

This applies to the entire range of stressors, from a small episode of acute panic to a larger context such as living through a natural disaster.

The majority of people generally adapt well over time to life-changing situations and stressful conditions.

But what enables them to do so? It involves resilience, an ongoing process that requires time and effort and engages people in taking a number of steps.

Resilience is the process of adapting well in the face of adversity, trauma, tragedy, threats or significant sources of stress — such as family and relationship problems, serious health problems or workplace and financial stressors. It means “bouncing back” from difficult experiences.

Research has shown that resilience is ordinary, not extraordinary. People commonly demonstrate resilience. One example is the response of many Americans to the September 11, 2001 terrorist attacks and individuals’ efforts to rebuild their lives.

Being resilient does not mean that a person doesn’t experience difficulty or distress. Emotional pain and sadness are common in people who have suffered major adversity or trauma in their lives. In fact, the road to resilience is likely to involve considerable emotional distress.

Resilience is not a trait that people either have or do not have. It involves behaviors, thoughts and actions that can be learned and developed in anyone.

So, here are 10 Ways to help Build Resilience

1. Make connections.

Good relationships with close family members, friends or others are important. Accepting help and support from those who care about you and will listen to you strengthens resilience.

Some people find that being active in civic groups, faith-based organizations, or other local groups provides social support and can help with reclaiming hope. Assisting others in their time of need also can benefit the helper.

2. Avoid seeing crises as insurmountable problems.

You can’t change the fact that highly stressful events happen, but you can change how you interpret and respond to these events. Try looking beyond the present to how future circumstances may be a little better. Note any subtle ways in which you might already feel somewhat better as you deal with difficult situations.

3. Accept that change is a part of living.

Certain goals may no longer be attainable as a result of adverse situations. Accepting circumstances that cannot be changed can help you focus on circumstances that you can alter.

4. Move toward your goals.

Develop some realistic goals.

Do something regularly — even if it seems like a small accomplishment — that enables you to move toward your goals. Instead of focusing on tasks that seem unachievable, ask yourself, “What’s one thing I know I can accomplish today that helps me move in the direction I want to go?”

5. Take decisive actions.

Act on adverse situations as much as you can. Take decisive actions, rather than detaching completely from problems and stresses and wishing they would just go away.

6. Look for opportunities for self-discovery.

People often learn something about themselves and may find that they have grown in some respect as a result of their struggle with loss. Many people who have experienced tragedies and hardship have reported better relationships, greater sense of strength even while feeling vulnerable, increased sense of self-worth, a more developed spirituality and heightened appreciation for life.

7. Nurture a positive view of yourself.

Developing confidence in your ability to solve problems and trusting your instincts helps build resilience.

8. Keep things in perspective.

Even when facing very painful events, try to consider the stressful situation in a broader context and keep a long-term perspective.

We need to avoid blowing the event out of proportion and remain positive.

9. Maintain a hopeful outlook.

An optimistic outlook enables you to expect that good things will happen in your life. Try visualizing what you want, rather than worrying about what you fear.

10. Take care of yourself.

Pay attention to your own needs and feelings. Engage in activities that you enjoy and find relaxing. Exercise regularly. Taking care of yourself helps to keep your mind and body primed to deal with situations that require resilience.

Additional ways of strengthening resilience may be helpful. For example, some people write about their deepest thoughts and feelings related to trauma or other stressful events in their life. Meditation and spiritual practices help some people build connections and restore hope.

The key is to identify ways that are likely to work well for you as part of your own personal strategy for fostering resilience.

Staying Flexible

Resilience involves maintaining flexibility and balance in your life as you deal with stressful circumstances and traumatic events.
This happens in several ways, including:

♦️Letting yourself experience strong emotions, and also realizing when you may need to avoid experiencing them at times in order to continue functioning.

♦️Stepping forward and taking action to deal with your problems and meet the demands of daily living, and also stepping back to rest and reenergize yourself.

♦️Spending time with loved ones to gain support and encouragement, and also nurturing yourself.

♦️Relying on others, and also relying on yourself.

Much of the above information came from an article entitled “Managing Your Emotions Can Save Your Heart” which appeared on the Harvard Health Blog, and excerpts from ‘The Road to Resilience‘ by the American Psychological Association.

The American Psychological Association has a range of articles exploring resilience that you may also find helpful.

Blessings ’til next time 🙂

Read Full Post »

Your Unique Gifts and Talents

Did you know that God made you unique from everyone else?

A while back, as part of my daily devotions, I was reminded of this – Just like the psalmist espouses in Psalm 139:14 “I am His unique creation, filled with wonder and awe.” (The Voice)

Other translations emphasise the fact that we are “fearfully and wonderfully made“,  and the Common English Bible says that “I was marvelously set apart.”

Which obviously brings with it many challenges in life. Especially when it pertains to our faith and the fact that being set apart means living with a higher standard, being devoted to God, and following His ways instead of the worldly ways.

This is something that the Apostle Paul was alluding to when writing to the Church of Rome “Do not become like the people who belong to this world. But let God completely change the way that you think, so that you live differently. Then you will understand what God wants you to do. You will know what is good. You will know what pleases God. You will know what is completely right.”
Romans 12:2 (Easy English Bible)

And when I think on these things and the fact that I have been saddled with a rare incurable autoimmune disease (Scleroderma) that manifests itself in a myriad of different ways, which are unique to the individual – I am left wondering about my uniqueness and to be honest I am in awe.

I like the psalmist give thanks “because I have been so amazingly and miraculously made.” And when I look around at His other creations and even the world around me I recognise that His “works are miraculous, and my soul [becomes even more] fully aware of this.”
Refer to Psalm 139:14 (God’s Word Translation)

The thing is, your uniqueness is not necessarily visible to everyone else. It is not as if you will stand out, but it is important that you know who you are and that you are different, unique.

And we all need to remember that, “Being different isn’t a bad thing. It means you’re brave enough to be yourself.” (Luna Lovegood)

After all we each need to “recognize and honour our uniqueness.”
(Sri Sri Ravi Shankar)

As I was recently exploring aspects of Interstitial Lung Disease and its management in Scleroderma I was struck by the fact that ‘the interstitium when it is stretched out is as big as a tennis court.’

This got me exploring other interesting facts about aspects of the human body that are also just as mind-blowing such as; ‘if you flattened out the entire small intestine it would have roughly the same surface area of a football field.‘

Also, ‘if you were to lay out all of the arteries, capillaries and veins in one adult, end-to-end, they would stretch about 60,000 miles (100,000 kilometers). What’s more, the capillaries, which are the smallest of the blood vessels, would make up about 80 percent of this length.‘

Having Scleroderma has definitely opened my eyes to the complexities of the human body and our individual uniqueness. No two cases of Scleroderma are the same. It has also extended my awareness of the awesomeness of God’s creation not just us as humans, but the world in which we live, and how we interact within it and with others.

You see, I’m not only in awe of God’s creation from a health perspective, but also my personal contribution to the world, how I live my life, the impact I am having on the world and those around me, my unique giftings, my abilities, talents, passions and skills etc. etc.

The thing is, there are abilities that I have that many people do not. There are talents and skills that I have in areas that others do not have. The same can be said for my giftings, as I believe that God has imparted the unique mix for me to be able to use for His glory. And my passions stem from who I am, not anybody else, and what it is that I believe God has called me to.

The same can be said for you! God made you and I unique, special, a one of a kind – And God did this so that you and I could use the life including our giftings, abilities, talents, passions and skills etc. He gave us to serve Him and others.

Since God designed us with these unique things and empowers us through the Holy Spirit dwelling within us, He intends for us to use them to serve and love others.

Another place God gifts us is in our life experiences. All of us have unique life experiences that give us the knowledge to help others.

“Our uniqueness, our individuality, and our life experience mold us into fascinating beings.” (Linda Thompson)

You have probably experienced this in your own life. Has anyone ever gone out of their way to help you, provide unique knowledge, or assist you in a difficult task? They were using their distinct gifts, abilities, talents, passions and skills etc. and life experiences to serve God by serving others.

What gifts or talents has God given you?

Do you have unique skills and abilities that others do not have? What are they?

What drives you?

What are you passionate about and why?

What life experiences have you had that others can learn from?

In what ways can you influence and inspire those that you interact with?

Why not make a list of these things, and spend some time thinking about who you can help, and who can help you understand and develop these things further.

The thing is, our giftings, abilities, talents, passions and skills etc. are God’s free gifts to us that we are to use to serve and love others.

We each need to celebrate our uniqueness, we need to explore what drives us, how we are wired and what makes us tick. For our uniqueness makes us special.

“Trusting your individual uniqueness challenges you to lay yourself open.”
(James Broughton)

This is something I have learnt as I coach and mentor others on my own health and faith journey.

At Spiramentum Ministries we’ve come to recognise that we can all get so busy doing a myriad of stuff in our lives, some of which is exhilarating and uplifting. While there are also times when it seems as if that same stuff is draining the very life out of us.

We’ve become increasingly aware that every week, month and year we each need to take time out of our busy schedules to rest, relax, refocus, and rejuvenate our bodies, minds and souls.

Tragically, we often don’t allow ourselves the time and space to do self-assessments so that we can better understand how we are wired and how we tick.

Therefore, we aim to assist people to focus on creating time and space in their lives to do this and to breathe.

We can assist you to break through difficult barriers, accept change, focus on forgiveness and realise that you have an ultimate purpose to fulfill on this earth, utilising your unique giftings, abilities, talents, passions and skills etc. We can also help you in setting a better course for your life, and enable you to experience life in all its fullness.

If this sounds like something you’d be interested in, get in touch with us through Facebook, LinkedIn, or via email: perry.pacpe@gmail.com.

Blessings ’til next time 🙂

Read Full Post »

Scleroderma and Lung Conditions

Scleroderma can affect the lungs in a variety of ways and the following information was sourced from Patients Engage; an enterprise with social impact, a patient / caregiver focused healthcare platform for supporting the management of chronic diseases.

In June 2023 Dr. Sujeet Rajan, a highly reputed Pulmonologist spoke on Interstitial Lung Disease (ILD) and its management in Scleroderma at the Sclerocon e-conference.

Dr. Rajan is a practising respiratory physician in Mumbai, India. He graduated from the Grant Medical College in Mumbai in 1989.

Following his post-graduation in Respiratory Medicine from the Seth, Dr. Rajan spent a brief time as a Lecturer at the GS Medical College following which he joined the Bhatia Hospital in Mumbai in January of 1996. He is also a post-graduate teacher at the Bombay Hospital Institute of Medical Sciences.

“There are three parts in the lung that we must know to understand what is happening in because sometimes you have an airway problem, sometimes you have a structure problem, and sometimes you have a problem in the lung vessels which is the pulmonary arteries. 

1. The Airways are the simplest part of the lung. They are balanced, bilateral and branched out into the lungs and look like trees turned upside down. They are rarely involved in Scleroderma. In airway diseases such as COPD and Asthma, these branches become narrow and the lungs distend. Such diseases are pretty easy to manage with inhalers.

2. Structural or Parenchymal diseases are more difficult to treat. This is what gets affected in Scleroderma. The interstitium is the thin lining inside our lung which transfers oxygen into the blood. The airways just bring the oxygen to the line, so they are the conducting mechanism – but the transfer into the blood occurs via the interstitium. Therefore, one of the tests to understand the interstitium is called the DLCO, which measures how well this interstitium is functioning.

If you stretch out the interstitium it is as big as a tennis court. It can get affected in two ways, one is that it can get swollen, and the other is it can get fibrosed or scarred. Both of these situations cause a problem in getting the oxygen into the blood. 

Inflammation can be potentially reversed, but once fibrosis occurs there’s no drug available to reverse it.

For inflammation you have steroids, azathioprine, mycophenolate and cyclophosphamide that have been used to reverse the inflammation with decent results. For fibrosis you have anti-fibrotic drugs available to help slow the progress.”

In the full article you can read a bit more about fibrosis and the prognostic factors that you need to know to get fibrosis treated or prevent the progression. Along with an overview of the studies that have been carried out to date (June 2023).

But as with all information check with your doctor / specialist what is relevant for you and your symptoms, as Scleroderma manifests itself in a myriad of ways.

I was further diagnosed with Interstitial Lung Disease only a few years after initially being diagnosed with Scleroderma in 2018, and have been on a bit of a journey ever since. Trying to work out how this incurable chronic autoimmune disease is affecting my body, mind and spirit.

This has involved a number of scans and tests, and as the disease slowly progresses making adjustments to my daily life so that I can continue thriving instead of letting it defeat me and those around me.

Recent scans and tests have revealed additional things / concerns that we will need to discuss with our specialists in due course, as we continue navigating this journey – one being the involvement of the third area that Dr. Sujeet touches on next…

“3. The third part of our lung is the vasculature and all the pulmonary arteries. About 15 years ago we had a blank slide on treating pulmonary artery hypertension, but we now have multiple treatments.

The right ventricle in our heart pumps through the pulmonary artery to the lungs. The lungs oxygenate this blood and returns it to the left atrium and down to the left ventricle and then it’s pumped to our entire body.

When pulmonary hypertension develops, the right ventricle pressure goes up.”

The thing is, if this pressure goes higher than the left ventricle you may experience bouts of dizziness and potentially blackout.

So it is far better to be diagnosed at an early stage through having an echocardiogram on a regular basis to highlight any early markers / changes.

“The treatments in pulmonary hypertension are those that are exclusive to the disease and patient needs.” They may include; PDE5 Inhibitors (Sildenafil, Tadalafil), Endothelin Receptor Antagonists (Bosentan, Ambrisentan), Prostacyclin Receptor Agonists (Inhaled Iloprost, IV Epoprostenol, Inhaled Treprostinil, Oral Selexipag), Soluble Guanyl Cyclate Inhibitors (Riociguat).

Unfortunately, “a lot of ILD patients get pulmonary hypertension” therefore it is important to explore preventative and rehabilitative therapy for those with SSc-ILD.

• Vaccinations are critical as one bad attack of the flu or Covid can really set you back.
• Management of Reflux because of esophageal dilation.
• Pulmonary Rehabilitation under a physiotherapist who understands cardiopulmonary rehabilitation is extremely important as symptoms progress.
• The use of Oxygen may be required at rest, when active, or potentially all the time. It’ll pay to know your oxygen saturation rate at rest, as well as when exercising to get an accurate picture.
• Explore Palliative Care – Unfortunately, “palliative care is often misunderstood as hospice and end-of-life care and is perceived as giving up on the patient.” This is not the case it often needs to go hand in hand with regular treatment and rehabilitation.
• Regular check-up with specialists and doctors, and explore referrals (as required) to other specialists as and when symptoms progress.

Hopefully, you have found this information beneficial.

Check out the full article, or listen to the presentation to the Sclerocon e-conference held in June 2023 on the Patients Engage site, to find out even more information about Interstitial Lung Disease and its management in Scleroderma.

Blessings ’til next time 🙂

Read Full Post »

Mogil’s Mobcast – A Scleroderma Chat

Have you checked out the latest episode (#101) of Mogil’s Mobcast – A Scleroderma Chat lately?

In this podcast Ann Mogilevsky is joined by Carolyn Haeler, founder of Mightlicious Gluten Free and Flour Brand whose mission is to create flavour packed, gluten-free cookies.

In 2012 Carolyn was diagnosed with Celiac Disease – a diagnosis that would literally change her life for better and for worse. 

She became even more passionate about nutrition, functional ingredients, and living a gluten-free life, which obviously came with many challenges as she made the necessary adjustments to her diet.

In 2017 she left her lucrative job in finance at JP Morgan and spent 4 months baking 15 hours a day, until she had created the perfect gluten free cookie. She learned that the key to GREAT gluten free baking was in the flour blend, and set about developing a gluten free flour blend that looks, tastes, and behaves like wheat flour became her mission.   

Carolyn was asked by Whole Foods Markets to create a vegan and gluten free cookie. Unsure if this was possible, she turned to her grandmother’s 100-year-old family recipe for oatmeal coconut cookies. To her surprise, with a few adjustments her innovative flour blend worked brilliantly, and today Vegan Oatmeal Coconut is her best-selling flavor.

Mightylicious hit the shelves of Whole Foods Markets Northeast division in January of 2018, just 6 months after Mightylicious was Incorporated. In 2021, Mightylicious raised $5M in capital via crowd funding site Republic.co. She is the first female, LGBTQ+ member to achieve this milestone.

Today, Mightylicious is sold in 43 states, including Hawaii and Alaska, and is still operated solely by Carolyn herself.

She’s launched 3 New Gluten Free Flour blends: All purpose GF flour, Vegan All Purpose GF flour, and GF Brownie Mix.

For additional information check out the MIGHTYLICIOUS website:

https://mightylicious.com/.

Alternatively you can also check out the following: https://www.instagram.com/mightyliciousfoods/, https://www.facebook.com/mightyliciousfoods, https://www.pinterest.com/mightylicious/ and Mightylicious | TikTok

---

The goal of Ann’s podcast is to have a central place for people afflicted with Scleroderma and a place for their families and friends to be informed by specialists in either Scleroderma or autoimmune topics.

She covers a wide range of topics like nutrition, medications, vitamins, and lifestyles. She also showcases stories from others affected by Scleroderma and how they have dealt with the challenges the disease brings.

Blessings ’til next time 🙂

Read Full Post »

Muscle Involvement in Systemic Sclerosis: A Simple Explanation

Muscle involvement is one of the most serious symptoms of scleroderma, or systemic sclerosis (SSc), with about one-third of all patients reporting some muscle weakness.

It can have a significant impact on patients quality of life and prognosis, and it can be associated with reduced muscle strength, pain, and difficulty with daily activities.

In some cases, severe muscle involvement can lead to complications like respiratory problems, cardiac involvement, and impaired mobility.

Muscle involvement in scleroderma can be quite varied, with different presentations and degrees of severity making it difficult to not only diagnose properly so that treatments can be provided – but also measuring the activity of muscle involvement is complicated.

Since being diagnosed with Scleroderma back in November 2018 I have constantly had muscle aches and pain which come on in fits and starts 😦

The following article entitled ‘Muscle Involvement in Systemic Sclerosis: A Simple Explanation‘ was written by Professor Susanna Proudman for Scleroderma Australia, and I felt it was quite pertinent, being Scleroderma Awareness Month to highlight this issue here on my blog.

She writes; Systemic sclerosis (SSc, a.k.a. scleroderma), is an autoimmune disease that affects the skin, blood vessels, and various organs including the muscles. Muscle problems in scleroderma can range from mild discomfort to severe weakness that affects daily activities. Understanding how and why muscles are affected can help people manage their symptoms and improve their quality of life.

Muscle problems are more common in people with diffuse systemic sclerosis (dcSSc) than in those with limited systemic sclerosis (lcSSc). 

How Does Scleroderma Affect the Muscles?

The overactive immune system in people with scleroderma mistakenly attacks the body’s own tissues. This leads to inflammation and excessive production of collagen, a protein that normally helps keep the skin and organs firm and elastic. In scleroderma, too much collagen builds up, causing thickening and stiffness in various parts of the body, including the muscles.

There are two main ways that scleroderma affects the muscles – Inflammation and Fibrosis.

Inflammation of the Muscles (Myositis): Some people with scleroderma develop a condition called myositis, which means “muscle inflammation.” This can cause pain, tenderness, and weakness, especially in the shoulders, upper arms, hips, and thighs.

Myositis makes it difficult to climb stairs, lift objects, or even stand up from a seated position. Over time, if the inflammation is not controlled, the muscles can become weaker and smaller.

This form improves with immunosuppressive medications.

Fibrosis (Scarring) of the Muscles: In addition to inflammation, scleroderma can cause fibrosis, or scarring, in the muscles. This happens when excess collagen replaces healthy muscle tissue, making the muscles stiff and less flexible.

Fibrosis can make movement difficult and lead to a gradual loss of strength. Unfortunately this form does not respond to immunosuppressive medications.

Symptoms of Muscle Involvement in Scleroderma

People with scleroderma-related muscle problems may experience:

• Muscle weakness, especially in the arms and legs
• Muscle pain or tenderness
• Fatigue, even with mild activity
• Stiffness, particularly in the morning or after rest
• Difficulty with everyday tasks like walking, lifting objects, or getting out of a chair

These symptoms can vary from person to person. Some individuals may have only mild muscle issues, while others may experience severe weakness that affects their independence.

Diagnosing Muscle Involvement in Scleroderma

Doctors use several tests to determine if scleroderma is affecting the muscles. These may include:

• Blood tests to check for muscle damage or inflammation (e.g., creatine kinase levels)
• Electromyography (EMG) to measure the electrical activity of muscles
• MRI scans to detect muscle inflammation or fibrosis
• Muscle biopsy to examine muscle tissue under a microscope which is the most reliable way to confirm the diagnosis.

However, these tests are not perfect. For example, a person can still have muscle problems even if their CK levels are normal. As there is no standard classification system for muscle disease in scleroderma, estimates of how common muscle involvement is in scleroderma vary widely, from 6% to 96% of patients. The proportion of patients enrolled in the Australian Scleroderma Cohort Study with biopsy-proven myositis ranges from 2-10%

Why Is Muscle Involvement Often Missed?

Doctors may not always recognize muscle problems in people with scleroderma. This is because muscle weakness can have other causes, such as

• Lack of physical activity due to pain or stiffness
• Poor nutrition
• Side effects of medications like steroids or cholesterol-lowering drugs
• Skin thickening, joint stiffness, or internal scarring, which can also limit movement

Importance of Early Diagnosis & Screening

It is crucial to identify muscle inflammation, if it is present, early so that treatment with immunosuppressive medications can begin as soon as possible. Without treatment, muscle weakness may worsen over time. Since muscle problems are common in scleroderma and can have a major impact on daily life, some experts believe that all SSc patients should be screened for muscle involvement both at the time of diagnosis and during follow-up visits.

Treatment and Management

There is no cure for scleroderma, but muscle involvement can often be managed with a combination of treatments:

• Medications – Corticosteroids and immunosuppressive drugs can help reduce inflammation and slow muscle damage.
• Physical therapy – Stretching and strengthening exercises can help maintain mobility and prevent stiffness.
• Pain management – Over-the-counter pain relievers, heat therapy, and massage may provide relief.
• Nutrition – A balanced diet with enough protein helps support muscle health.

Muscle involvement in scleroderma can be challenging, but early diagnosis and treatment can help improve symptoms and maintain function. Staying active, following a treatment plan, and working with healthcare professionals can make a big difference in managing this aspect of the disease.

I hope that you’ve found this information helpful.

Blessings ’til next time 🙂

Read Full Post »

Scleroderma Awareness Month

June is Scleroderma Awareness Month, and scleroderma communities around the world are kicking into gear to spread awareness about this rare autoimmune disease that I was diagnosed with back in November 2018.

As winter’s chill sets in around Australia, imagine facing the cold with a condition that makes warmth not just a comfort, but a necessity. For over 6,000 Australians living with scleroderma, this is a daily reality.

Throughout June, during World Scleroderma Awareness Month, Scleroderma Australia invites you to “Snuggle Up” and make a tangible difference.

“Snuggle Up for Scleroderma” is more than a call to stay warm; it’s a nationwide movement to raise funds for specialist scleroderma nurses. These dedicated professionals provide essential support, helping patients navigate the complexities of this chronic autoimmune disease.

It is the eighth year of Scleroderma Australia’s Snuggle Up campaign, and your involvement can make it the most impactful yet. Whether you donate, host an event, or simply spread the word, your actions can help contribute towards a warmer, more supportive community for those living with scleroderma.

In the U.S. the National Scleroderma Foundation (NSF) has selected “Stories of Strength” as their theme for this year, encouraging people with scleroderma to share their stories about how the disease has affected them and how they have adapted to living with scleroderma.

They are shining a light on powerful, inspiring journeys of individuals and families impacted by Scleroderma, encouraging people to create short videos detailing their experiences, sharing them with the NSF and on social media with the hashtag #storiesofstrength.

In Canada, the Make a Move for Scleroderma initiative features a variety of in-person fundraising walks with proceeds going towards providing education, support, and advocacy for people with scleroderma.

A virtual option is also available called Move Your Way. “By participating in Move Your Way, you will still be making a move in your favourite way – walking, running or cycling, climbing stairs, doing yoga, gardening, fishing – the options are endless!,” the organization says on its website.

People are encouraged to spread the word on social media using the hashtags #Scleroderma, #HardWordHarderDisease, #MakeAMove2025, and #MAM4Scleroderma.

In the United Kingdom, Scleroderma and Raynaud’s U.K. is also hosting walks and encouraging engagement on social media with the hashtags #SRUK, #sclerodermaawareness, and #takeaction. They are also encouraging people to contact their elected representatives to advocate for policies to support the scleroderma community.

Scleroderma awareness month culminates in World Scleroderma Day on June 29.

The day is part of a global effort to highlight the need to raise awareness and advocate for institutional policies to support people affected by scleroderma. The Federation of European Scleroderma Associations chose that date in 2009 to commemorate artist Paul Klee, who died of systemic sclerosis on June 29, 1940.

Blessings ’til next time 🙂

Read Full Post »