“Still alive and kicking” – The importance of sickle cell disease clinical trial awareness

"Still alive and kicking" - The importance of sickle cell disease clinical trial awareness By Kathleen Hoffman, PhD, MSPH Sickle cell disease (SCD) is a rare disease: an inherited and incurable blood disorder that causes red blood cells to be misshapen and rigid, affecting their ability to provide oxygen to tissues. Their shape and rigidity cause random blood vessel inflammation and blockages anywhere in the body, with associated organ damage. Six million people suffer from SCD worldwide and many more carry the trait that causes it.1 It prevails in people whose genetics include a connection with sub-Saharan [...]

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Nov 2021By |1 Comment

New classes of psoriatic arthritis drugs in clinical trials show promise

New classes of psoriatic arthritis drugs in clinical trials show promise By Kathleen Hoffman, PhD, MSPH Psoriatic Arthritis (PsA) is an inflammatory autoimmune disease affecting approximately one to two percent of the population. While psoriasis causes red and scaly patches on the skin, PsA creates mild to severe pain and swelling of any joint. About 5 to 30 percent of patients with psoriasis eventually develop PsA, and 85 percent of people with PsA have psoriasis as a comorbidity. Because there is no cure, treatment is focused on symptom management.1,2,3 That is the high-level view. At the experiential [...]

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Nov 2021By |0 Comments

Epilepsy can happen to anyone at any age

Epilepsy can happen to anyone at any age By Kathleen Hoffman, PhD, MSPH Seizures are frightening for those who have them, for their loved ones and for onlookers. Descriptions of epilepsy go back as far as the Sumerians in 2500 BC. Expressing awe and dread, Babylonians, in 1050 BC, called seizures “​​ṣibtu” translated as “possession” and ṣabātu, “to seize” as in being possessed or seized by the gods.1 Although we still use the term “seizure,” today, these events are now understood. Arising from a disruption in the delicate balance between the internal and external environment of a [...]

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Nov 2021By |0 Comments

Updates from ASCO and ESMO 2021 Add to Successes in Hodgkin Lymphoma Research and Treatment

Updates from ASCO and ESMO 2021 Add to Successes in Hodgkin Lymphoma Research and Treatment By Kathleen Hoffman, PhD, MSPH In 1832 Sir Thomas Hodgkin described a morbid condition of the glands and spleen which in 1865 was named Hodgkin disease by Samuel Wilkes. It was a fatal disease. Yet it has become, as this Inspire patient describes, highly treatable.1 my first oncologist, trying to reassure me and make me feel better, told me that if someone said to him it was DEFINITE that he had to get cancer, but he could choose what kind, he would, [...]

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Oct 2021By |0 Comments

Impressive Advances in Treating Chronic Lymphocytic Leukemia

Impressive Advances in Treating Chronic Lymphocytic Leukemia By Kathleen Hoffman, PhD, MSPH Chronic Lymphocytic Leukemia (CLL) is the most prevalent form of adult leukemia, with about 20,000 new diagnoses per year in the United States alone.1  While it can occur at earlier ages, it is primarily a disease of older adults, with 70 years as the average age at diagnosis. Most of those who are diagnosed have no symptoms.2 CLL is often discovered when patients have a regular CBC test, and the findings indicate that the white blood cell (WBC) count is elevated. Under a microscope, the [...]

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Sep 2021By |0 Comments

Undertreated Psoriasis Patients Need Answers

Undertreated Psoriasis Patients Need Answers By Kathleen Hoffman, PhD, MSPH A 2021 study concluded that psoriasis continues to be a common inflammatory disease, affecting more than 7.5 million adults in the US alone --  3.0% of the US adult population.1  By far the most common form (80% of cases)2 is plaque psoriasis, which intermittently creates patches of scaly and itchy skin, often on the scalp, knees, or elbows, but there are multiple distinct types with different presentations. The inflammation that creates psoriasis is also linked with an increased risk for other conditions, by a process that is [...]

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Sep 2021By |0 Comments

Born Since 1990? Your Risk of Colorectal Cancer Just Went Up

Born Since 1990? Your Risk of Colorectal Cancer Just Went Up By Kathleen Hoffman, PhD MSPH The age at which people at average risk of colon cancer should start being screened used to be 50.2 In May 2021, the U.S. Preventive Services Task Force lowered it to 45. It’s been lowered because the age at which people are being diagnosed with colorectal cancer (CRC) is going down even as the survival rate of people with CRC over 50 is improving.1 My son, he’s 28, was diagnosed in September 2019 with stage 4 rectal cancer, the tumor was [...]

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Aug 2021By |0 Comments

Positive News for Triple Negative Breast Cancer

Positive News For Triple Negative Breast Cancer By Kathleen Hoffman, PhD, MSPH Almost 150,000 patients and caregivers have interest in, have joined communities, have searched and posted about breast cancer and advanced breast cancer on Inspire. Almost 22,000 posts have been written about breast cancer research. There has been intense interest in finding medications that can penetrate the 10-20% of breast cancers that don’t respond to the medications that target three hormone and protein receptors on the tumor cell’s surface. When a breast tumor cell lacks the receptors for estrogen, progesterone, or HER-1 or -2 on the [...]

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Aug 2021By |0 Comments

The Life Changing Diagnosis of Inflammatory Bowel Disease

The Life Changing Diagnosis of Inflammatory Bowel Disease By Kathleen Hoffman, PhD MSPH ​​ I've had UC for 4 years also. Diagnosed with a colonoscopy after 5 months of diarrhea, losing 1/3rd of my otherwise normal weight and enough blood to require a 2-pint transfusion. Pausing a conversation to use the restroom is biologically necessary, but can be socially awkward. People living with inflammatory bowel diseases (IBD) find themselves saying “Excuse me” many more times a day than they would like and experience pain with symptoms nobody enjoys talking about. The two most common inflammatory bowel diseases [...]

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Aug 2021By |0 Comments

“I need to breathe” — Living with Asthma: Patient Experiences, Old Challenges, New Drugs

"I need to breathe" — Living with Asthma: Patient Experiences, Old Challenges, New Drugs By Kathleen Hoffman, PhD MSPH Earlier this month, the American Lung Association (ALA), Inspire’s partner for the “Living with Asthma” online community, announced that it is looking for patient panelists to participate in a PFDD (Patient-Focused Drug Development) meeting on Pediatric Asthma, to be held virtually on 9/20/2021. “The meeting will consist of an overview of pediatric asthma, an explanation of the Food and Drug Administration’s PFDD meeting process, and two panel sessions,” explained Annette Eyer, the ALA’s National Assistant Vice President [...]

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Aug 2021By |0 Comments