Early Signs What is Newly & Symptoms Diagnosed...

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Newly Diagnosed Scleroderma? Most oſten, the earliest sign & symptom of scleroderma is when a person’s fingers become extremely sensitive to cold temperatures and / or emotional stress, which causes them to sometimes change colour (blue, white or red). is condition is known as Raynaud’s Phenomenon – it is common in almost 90% of people with scleroderma. It is a condition that occurs when the small blood vessels contract in response to cold or emotional stress. As the vessels contract, blood supply is reduced which causes hands and feet to become cold and turn white and blue. As blood flow returns, they become red. Early Signs Scleroderma (also called systemic sclerosis) is a chronic, multi-symptom autoimmune disease whereby the body’s immune system attacks its own tissues. Scleroderma can vary a great deal in terms of severity. Although scleroderma is oſten referred to as if it were a single disease, in fact, it is really a symptom of a group of diseases that involve the irregular growth of collagen. Collagen is a protein in connective tissue found in skin, tendons, ligaments, cartilage, bone, blood vessels, the digestive system and other internal organ surfaces. In some forms of scleroderma, hard, tight skin is the extent of this irregular collagen over-production process. In other forms, however, the problem goes much deeper, and may severely affect blood vessels and internal organs such as the heart, lungs, and kidneys. For many persons with the disease, they have few or minimal symptoms and are able to lead a “typical” life. For others, the disease is much more severe and causes disfiguring, disabling and life-threatening changes to the body. In all cases, scleroderma is a chronic, life-long health condition. At present there is no known cure, but as with other chronic illnesses there are ways people can control or manage its systems. What is Scleroderma? with Recognizing Symptoms & Knowing How to Access Care & Develop Support Newly A new diagnosis of scleroderma doesn’t have to be overwhelming, even though the disease itself is complex. e symptoms of scleroderma vary greatly from individual to individual, and the effects of scleroderma can range from very mild to severe. e seriousness will depend on what parts of the body are affected and the extent to which they are affected. A mild case can become more serious if not properly treated. Prompt and proper diagnosis and treatment by qualified physicians may minimize the symptoms of scleroderma and lessen the chance for irreversible damage. 136 Kenilworth N Hamilton, ON L8H 4R8 1-888-776-7776 www.sclerodermaontario.ca & Symptoms Diagnosed Other early signs & symptoms of scleroderma may include: fatigue, weakness, sleep disturbances, digestive disturbances, skin chang- es, pain & joint stiffness. Structure of the Collagen Triple Helix Molecule Information provided by: Dr. Maureen Mayes, MD, MPH Dr. Khanh Ho, MD Consider contacting us. We are interested to learn how this information is being used: [email protected] Reviewed by:

Transcript of Early Signs What is Newly & Symptoms Diagnosed...

Page 1: Early Signs What is Newly & Symptoms Diagnosed Scleroderma?sclerodermaontario.ca/documents/SSOnewlydiagnosedbrochure.pdf · Scleroderma? Most often, the earliest sign & symptom of

Newly Diagnosed

Scleroderma?Most often, the earliest sign & symptom of scleroderma is when a person’s fingers become extremely sensitive to cold temperatures and / or emotional stress, which causes them to sometimes change colour (blue, white or red). This condition is known as Raynaud’s Phenomenon – it is common in almost 90% of people with scleroderma. It is a condition that occurs when the small blood vessels contract in response to cold or emotional stress. As the vessels contract, blood supply is reduced which causes hands and feet to become cold and turn white and blue. As blood flow returns, they become red.

Early Signs

Scleroderma (also called systemic sclerosis) is a chronic, multi-symptom autoimmune disease whereby the body’s immune system attacks its own tissues. Scleroderma can vary a great deal in terms of severity. Although scleroderma is often referred to as if it were a single disease, in fact, it is really a symptom of a group of diseases that involve the irregular growth of collagen. Collagen is a protein in connective tissue found in skin, tendons, ligaments, cartilage, bone, blood vessels, the digestive system and other internal organ surfaces. In some forms of scleroderma, hard, tight skin is the extent of this irregular collagen over-production process. In other forms, however, the problem goes much deeper, and may severely affect blood vessels and internal organs such as the heart, lungs, and kidneys. For many persons with the disease, they have few or minimal symptoms and are able to lead a “typical” life. For others, the disease is much more severe and causes disfiguring, disabling and life-threatening changes to the body. In all cases, scleroderma is a chronic, life-long health condition. At present there is no known cure, but as with other chronic illnesses there are ways people can control or manage its systems.

What is

Scleroderma?with

Recognizing Symptoms & Knowing How to Access Care

& Develop Support

Newly

A new diagnosis of scleroderma doesn’t have to be overwhelming, even though the disease itself is complex. The symptoms of scleroderma vary greatly from individual to individual, and the effects of scleroderma can range from very mild to severe. The seriousness will depend on what parts of the body are affected and the extent to which they are affected. A mild case can become more serious if not properly treated. Prompt and proper diagnosis and treatment by qualified physicians may minimize the symptoms of scleroderma and lessen the chance for irreversible damage.

136 Kenilworth N Hamilton, ONL8H 4R81-888-776-7776www.sclerodermaontario.ca

& Symptoms Diagnosed

Other early signs & symptoms of scleroderma may include: fatigue, weakness, sleep disturbances, digestive disturbances, skin chang-es, pain & joint stiffness. Structure of the Collagen Triple Helix Molecule

Information provided by: Dr. Maureen Mayes, MD, MPHDr. Khanh Ho, MD

Consider contacting us. We are interested to learn how this information is being used: [email protected]

Reviewed by:

Page 2: Early Signs What is Newly & Symptoms Diagnosed Scleroderma?sclerodermaontario.ca/documents/SSOnewlydiagnosedbrochure.pdf · Scleroderma? Most often, the earliest sign & symptom of

Newly Diagnosed with Scleroderma?

The Emotional Aspects

A person newly diagnosed with scleroderma may feel alone and uncertain about where to turn for help. He or she may experience a number of other feelings and emotional reactions from time to time, including initial shock or disbelief, fear, anger, denial, self-blame, or guilt, grief, sadness, or depression. Family members may have similar feelings. Feelings in themselves are neither good nor bad.…One simply “has” them. Sharing them with family and friends or with others who have had similar experiences may be helpful. Professional counseling may also help persons with scleroderma and their family members who are having difficulty coping with their feelings. Experiences and struggles with stigma often contribute to the emotional grief that persons with scleroderma may feel in light of their changing health and body. That is why the use of language is important in communication to and about PERSONS with scleroderma! Although they may also be “patients ” – in the context of a physician’s office, hospital or clinic -individually he or she is much more than that! Thinking of oneself as a total person with a full life to lead is important, as it may help to keep scleroderma in perspective and enable one to maintain a positive but realistic attitude.

First Stepsof Scleroderma If you have been newly diagnosed with scleroderma

you are not alone! Although scleroderma is a relatively rare condition, it is estimated that as many as 30,000 persons in Canada and as many as 300,000 persons in the United States are living with this condition. You can learn more about scleroderma and your treatment options – in order to better cope and manage living with scleroderma - through appropriate medical care, lifestyle modification and support.

Step 1Use the Scleroderma Society of Ontario web-site (www.sclerodermaontario.on.ca) for basic information and guidance. Start by reading the sections in this web-site found in Scleroderma Overview and Diagnosis & Treatment to provide you with some basic information about issues relating to scleroderma health care management. Be sure to know why a person with early diffuse scleroderma should perform routine blood pressure monitoring (as hypertension – if left untreated – quickly can lead to renal crisis and therefore must be treated as a medical emergency with rapid control of blood pressure elevation and assessment of renal function). Printed information leaflets may be used as helpful resources to familiarize yourself – as well as your family, friends, family physician and other health care providers – about scleroderma.

Step 2Access medical care by a doctor who is experienced in the care and treatment of persons with scleroderma. In Canada, there are physicians (usually rheumatologists or immunologists) who specialize in the scleroderma medical care at Scleroderma Treatment Clinics. Patient care is co-ordinated through the treating scleroderma specialist, who works alongside a team of sub-specialists to treat the many body systems (such as the skin, heart, digestive tract, kidneys, lungs, and blood vessels) that may be impacted by scleroderma symptoms.

To access a list of Canadian Medical Scleroderma Specialists visit:www.sclerodermaontario.ca/Treatment_Centres.htmlFor clinic appointments to scleroderma specialists, a doctor’s letter of referral is required.

Step 3Get involved! Learn to improve your quality of living as a person with scleroderma by sharing your experiences and learning from others who are learning to live with life as a person with scleroderma. Join a Scleroderma Support Group today! Invite your family and friends too, and together, learn successful tips about coping with and self-managing daily choices and challenges. Stay informed about new medical treatments and lifestyle changes that effectively relieve or delay the progress of disease symptoms. To access information about Scleroderma Support Groups nearest you visit:www.sclerodermaontario.ca/Find_A_Support_Group.htmlStart receiving copies of the Scleroderma Society of Ontario’s newsletter, “The Scleroderma Connection” which features information about community activities, personal stories, education events, health news and research updates. Contact us by visiting:http://www.surveymonkey.com/s/MYQQC5HThe Scleroderma Society of Ontario welcomes your support in the fight against this disease through contributions of your experience, time and/or financial gifts. Volunteers and donations help the Scleroderma Society of Ontario in purposeful and meaningful ways - to build community support and awareness, to organize fund-raising events in support of research and patient wellness, and to advocate for patient rights in the public and private sectors. For moreinformation, please contact the Scleroderma Society of Ontario at: telephone number (toll free) 1-888-776-7776 or www.sclerodermaontario.ca