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World Scleroderma Day




There are many types of incurable diseases - some more common than others and some more understood. Years and years of research goes into finding information on causes, symptoms, and cures, which means many people live their whole lives partially in the dark about what they are going through. We put our faith in science and medicine to come up with solutions, but these solutions take time, and sometimes never come about. In the meantime, it’s important we offer support and raise awareness for individuals living with these conditions, and the uncertainty that comes with it.


June is Scleroderma Awareness Month and June 29th is World Scleroderma Day - selected to commemorate gifted artist, Paul Klee, who died of Systemic Scleroderma on June 29th, 1940.

Scleroderma, which translates to “hard skin”, is one of these incurable diseases that are relatively rare and not often talked about. It is a connective tissue, autoimmune, and rheumatic disease which manifests in many ways and involves many components, some probably still unknown.

The most visible and common symptom of Scleroderma is the tightening and hardening of skin due to an overproduction of collagen, which is a protein found throughout the body. Some cases of Scleroderma only affect the skin (Localized Scleroderma), while others harm joints, blood vessels, internal organs, and the digestive system as well (Systemic Scleroderma).


Scleroderma is an autoimmune disease, which means the immune system, which is supposed to protect the body from infection, attacks its own tissues. It is thought that when the immune system causes injury to cells that line blood vessels, connective tissue cells are triggered to make too much collagen, which leads to a build-up.


Localized Scleroderma usually causes patches of thick, hard skin in certain patterns:

  • Morphea causes oval-shaped areas of thick skin with an ivory appearance and bruise-like edges that can spread or darken over time. They commonly appear on the chest, stomach, and back, and can appear on the face, arms, and legs.

  • Scleroderma causes lines of thickened skin to run down arms, legs, and sometimes the forehead.

Systemic Scleroderma is more severe and can affect many organs with a large variability of symptoms:

  • Sclerodactyly is the thickening of skin in the fingers and toes that leads to fingers tightening into a bent position with limited mobility.

  • Skin can thicken all over the body, leading to limited mobility or immobility in different joints. People with Scleroderma may not be able to open or close their fingers, twist their wrists, extend their arms or legs, etc. It all depends where the skin tightens on the body, which can vary greatly between individuals.

  • Raynaud phenomenon is when cold temperatures or stress cause blood vessels to spasm. This results in temporary discoloration, numbness, and pain in the fingers.

  • Telangiectasia is when dilated blood vessels can be seen through the skin as red dots or spots.

  • There may also be internal organ scarring which can lead to gastrointestinal, pulmonary, and cardiac disease.

  • Other symptoms include high blood pressure, problems with the esophagus that can cause chronic heartburn, and lung scarring which can lead to shortness of breath.


Approximately 1 in 10,000 individuals are affected by Scleroderma. It is more prevalent in women and African Americans, and appears between the ages of 30-50, but some cases have seen younger and older. It is understood that Scleroderma is not contagious, infectious, nor cancerous.


There is no cure for Scleroderma at present day and the cause itself is still unknown. Spreading awareness with the hope to increase research is key, which is why having a month and day dedicated to Scleroderma is so important. It does not take much work to be a part of change and to support people in your community. Believe it or not, even reading this far helps make a difference - now you are a bit more knowledgeable about the disease, and if you ever come across someone with visible symptoms, you understand just a bit about what they might be going through. Together we can support each other, spread awareness, and one day find a cure.


If you are interested in finding out more about Scleroderma and on-going research, check out the Scleroderma Canada website https://scleroderma.org/what-is-scleroderma/ or any of the cited references below:


 

References


National Scleroderma Foundation. (2023, June 23). https://scleroderma.org/


Smith, Y. (2023, February 23). Scleroderma history. News. https://www.news-medical.net/health/Scleroderma-History.aspx


Systemic scleroderma - symptoms, causes, treatment: Nord. National Organization for Rare Disorders. (2023, January 12). https://rarediseases.org/rare-diseases/systemic-scleroderma/#subdivisions


U.S. Department of Health and Human Services. (2023, April 3). Scleroderma. National Institute of Arthritis and Musculoskeletal and Skin Diseases. https://www.niams.nih.gov/health-topics/scleroderma#:~:text=Scleroderma%20is%20an%20autoimmune%20connective,much%20collagen%2C%20leading%20to%20scleroderma.


What is scleroderma?. National Scleroderma Foundation. (2022, January 4). https://scleroderma.org/what-is-scleroderma/

 
 
 

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