Trying To Find More Answers About Tuberous Sclerosis Complex

Trying To Find More Answers About Tuberous Sclerosis Complex By Kathleen Hoffman, PhD, MSPH Tuberous Sclerosis Complex (TSC) is a “rare” genetic disease: According to the Tuberous Sclerosis Alliance, Inspire’s community partner, “At least two children born each day will have tuberous sclerosis complex.”1 Classifying a disease that affects a million people worldwide as “rare” doesn’t comfort patients with TSC. Created by mutations in one or two genes, TSC1 and TSC2, its manifestations vary widely depending on the nature of the mutation, which is why it is called “tuberous sclerosis complex.” It’s a complex genetic disorder. It [...]

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Feb 2021By |0 Comments

Eosinophils: Friend or Foe? Eosinophilic Disorders

Eosinophils: Friend or Foe? Eosinophilic Disorders By Kathleen Hoffman, PhD, MSPH Eosinophils are amazing, power-packed cells of the innate immune system. Loaded with granules of cytokines, chemokines, RNAses, cationic proteins, growth factors and more, these leukocytes were thought to be the body’s primary tool to destroy parasites. Now, however, eosinophils are being understood as regulators of inflammation and tissue regeneration. They are also involved in maintaining the defensive structure of the epithelium, residing in mucosal tissue that interfaces with the environment. Additionally, they act as antigen presenting cells (APCs), communicating between the innate and adaptive immune systems. [...]

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Feb 2021By |0 Comments

What’s one of the top ten mysterious diseases? Sarcoidosis

What’s one of the top ten mysterious diseases? Sarcoidosis By Kathleen Hoffman, PhD, MSPH Rare disease sufferers may be few in number for a particular condition, but they are an army of survivors when they’re together.  Sarcoidosis is one of the 3000 rare diseases represented in Inspire’s community.  With 600,000 Inspire members affected by rare conditions, the over 95,000 making up the Sarcoidosis audience on Inspire or “sarkies,” as they call themselves, are in good company. Dr. Michael Iannuzzi,  the Edward C. Reifenstein Professor and Chair at the State University of New York-Upstate Medical University, calls sarcoidosis [...]

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Jan 2021By |2 Comments

Living with a Mysterious Illness: Scleroderma

Living with a Mysterious Illness: Scleroderma By Kathleen Hoffman, PhD, MSPH Unless you’re a specialist, you might not recognize a chronic disease that is named for its effect on the skin -- but might not appear there. It’s scleroderma. In fact, the symptoms vary greatly for each person: From 75-90% of patients have GI symptoms with it; it can be visible or invisible; it can come and go or last a lifetime; and can be mild or life threatening. The cause is unknown and it might appear at any age., It affects about 300,000 people in the [...]

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Dec 2020By |0 Comments

Good News about Lung Cancer? Thanks to Bench Science and Pharma

Good News about Lung Cancer? Thanks to Bench Science and Pharma By Kathleen Hoffman, PhD, MSPH Targeted therapies, monoclonal antibodies, and immune checkpoint inhibitors are the good news - making a significant difference in lung cancer mortality, a new study states. Published in The New England Journal of Medicine, the report said, “Mortality from NSCLC decreased even faster than the incidence ...and this decrease was associated with a substantial improvement in survival over time that corresponded to the timing of approval of targeted therapy.” 1Posts and reassurances that people read while visiting the American Lung Association’s Lung [...]

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Nov 2020By |0 Comments

October 13th is Metastatic Breast Cancer Awareness Day

October 13th is Metastatic Breast Cancer Awareness Day By Kathleen Hoffman, PhD, MSPH The symbol for breast cancer awareness is a pink ribbon. But for people with the disease, one month and a pink ribbon are not enough. Many cancer drugs are evaluated by the amount of time the treatment delays progression, and despite new treatments and genetic advances, the 5-year survival rate for advanced or metastatic breast cancer is still just 27%. As Judy Perkins, diagnosed with metastatic breast cancer in 2013, said, “I have little interest in pink ribbons… I don’t want a ribbon. I [...]

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Oct 2020By |0 Comments

September is Blood Cancer Awareness Month

September is Blood Cancer Awareness Month By Kathleen Hoffman, PhD, MSPH The term “blood cancer” encompasses so many complex disorders that Inspire has several support communities focused on blood cancers, including groups for Leukemia, Lymphoma, Myeloma, and Myelodysplastic Syndromes (MDS). According to Inspire’s partner, the Leukemia Research Foundation, these four blood cancers impact about 1.3 million people in the United States and their families.1 This year there are expected to be 60,300 people newly diagnosed with leukemia; 83,200 with Hodgkin or non-Hodgkin lymphoma; and 31,000 with myeloma.2 Myleodysplastic syndromes are rarer, with an estimated 10,000 cases total [...]

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Sep 2020By |0 Comments

For Ovarian Cancer Awareness Month: Teal Sisters Support Each Other and Discuss Treatments on Inspire

For Ovarian Cancer Awareness Month: Teal Sisters Support Each Other and Discuss Treatments on Inspire By Kathleen Hoffman, PhD, MSPH September is Ovarian Cancer Awareness Month. The Ovarian Cancer Research Alliance (OCRA), Inspire’s partner, is holding its 2020 National Conference, “Uniting for Hope,” virtually from Sept. 29 - Oct. 2 this year. One of the conference’s popular gatherings is always “Ask the Experts,” Q&A sessions between attendees and specialists. The topics this year include genetic testing, clinical trial participation, and managing recurrence. Another top event is the Teal Takeover Party, where Teal Sisters and their friends get [...]

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Sep 2020By |0 Comments

For Psoriasis Awareness Month: The Psoriasis Support Community on Inspire Talks Treatments

For Psoriasis Awareness Month: The Psoriasis Support Community on Inspire Talks Treatments By Kathleen Hoffman, PhD, MSPH Try to list chronic illnesses that you think have a major effect on the person’s daily quality of life. You can probably think of several, but is psoriasis on the list? It ought to be. One Inspire member described his current symptoms in a post: Standing still in one place for five seconds feels like super pressure [around my] ankle and legs and hundreds of ants and burning. Sitting on a desk with step stool is little better in terms [...]

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Aug 2020By |0 Comments

The Bladder Cancer Advocacy Network Support Community on Inspire Talks about Treatments

The Bladder Cancer Advocacy Network Support Community on Inspire Talks about Treatments By Kathleen Hoffman, PhD, MSPH If asked to list the most common cancers in the U.S., most people would include breast, lung, skin, and prostate cancers. So you may be surprised to learn that the fourth most common cancer among men in the U.S. is bladder cancer.1 The estimate for 2020 is that new cases of bladder cancer will be diagnosed in 81,400 people.1 It’s the sixth most common cancer overall, and while 3 out of 4 cases affect men, women are more likely to [...]

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Jul 2020By |0 Comments