Holiday Gift Ideas for Chronic Illness Patients

‘Tis the season for gift giving, and as many shoppers look for Black Friday deals this week to complete their holiday shopping, we’ve compiled a list of gift ideas for the chronic illness patient in your life.

1. Scented Heating Pad

When I first developed Sjogren’s Syndrome, I had debilitating joint pain that was only relieved by one thing: heat. I had a cheap little heating pad that I bought from a local pharmacy that I could use on my joints to ease some of my aches and pains. That cheap little heating pad broke, but fortunately, I was gifted a much nicer, lavender-scented heating pad that is perfect for not only my joints, but menstrual cramps and everyday aches and pains as well. Plus, this aromatic device can be quickly heated in your Microwave in under two minutes.

Solayman Tech Lavender Scented Microwave Heating Pad

2. Compression Gloves

On the topic of joint pain, one of my friends from college has rheumatoid arthritis, a debilitating autoimmune condition affecting his joints. To relieve some of his joint pain, he wears compression gloves when completing everyday activities, like work or going to the gym. These compression gloves are made out of a lightweight fabric that makes everyday movement easy while still providing relief for painful, inflamed joints. Plus, we like that these gloves are fingerless at the tips, making it easy to still type, text, or grip objects.

Geyoga Unisex Fingerless Compression Gloves

3. Home Office Humidifier

With the dry winter air and many people working from home, a great holiday gift would be a home office humidifier. I can tell you as a Sjogren’s patient, there’s nothing worse than having to put eyedrops in up to 15 times per day! With a humidifier, however, your environment stays comfortably humid so your eyes and skin don’t get overly dried out. I like this model because it’s small enough for a home office, but large enough that it doesn’t have to be constantly refilled.

Pure Enrichment MistAire Ultrasonic Cool Mist Humidifier

4. Moisturizing Cream Gift Set

On the theme of moisture, any chronic illness patient dealing with dryness and skin sensitivity can appreciate a good skin moisturizer. Plus, with all of us constantly sanitizing our hands, they’re bound to be drier than ever. We love anything by Burt’s Bees, but we especially love this gift set of moisturizing skincare products, formulated specifically for dry, sensitive skin. Their all-natural products are made from beeswax, giving each product a delicate scent of honey.

Burt’s Bees Gift Set – 3 Hand Repair Moisturizing Products

5. Weighted Blanket

Every chronic illness patient knows the importance of sleep and the impact quality sleep can have on one’s overall health and wellbeing. That’s why when insomnia hits, a quality weighted blanket can help. My husband purchased a 15-pound weighted blanket for me when I was having difficulty staying asleep, and it definitely did the trick! We love that this particular blanket comes in a variety of weights and mattress sizes, so you can find the one that will work best.

Waowoo Adult Weighted Blanket

Are you a chronic illness patient, and if so, what do you have on your wishlist? Let us know in the comments below!

Experimental Immunotherapy Puts Lupus into Remission for Young Patient

20-year-old lupus patient Thu-Thao received an experimental treatment which put her symptoms into remission. Story via Autoimmune Warrior.
Thu-Thao (center) received an experimental treatment called CAR-T which put her lupus symptoms into remission.

Thu-Thao was 16 years old when she was diagnosed with systemic lupus erythematosus, a debilitating autoimmune disease that causes a myriad of symptoms, including organ damage, joint pain, fatigue, brain fog, and more. Thu-Thao’s main lupus symptoms were severe joint pain, heart palpitations, kidney issues, hair loss, and skin rashes. She faced life-threatening complications, and as a result, had to drop out of playing sports.

After being diagnosed with lupus, Thu-Thao received a number of conventional treatments over the course of four years, including the anti-malarial drug hydroxychloroquine (the generic for Plaquenil), steroids, biologics, and immunosuppressants. However, none of these treatments were effective and her joint pain and skin problems continued to worsen.

In March 2021, at 20 years of age, Thu-Thao received an experimental immunotherapy called chimeric antigen receptor T-cell, or CAR-T for short. This immunotherapy is typically used on cancer patients, specifically those experiencing aggressive forms of leukemia or lymphoma. This therapy reprograms destructive immune cells in the patient’s body, allowing them to recognize and destroy tumors. 

However, B-cells (the target of the therapy) are also heavily implicated in lupus, in which they create antibodies that directly target double-stranded DNA. The researchers theorized that they could use CAR-T therapy to decrease B-cell numbers in the body, resulting in fewer circulating autoantibodies that cause lupus symptoms. 

Following the therapy, Thu-Thao’s CAR-T cell numbers rapidly increased and remained circulating in her system. The B-cells and autoantibodies in her body—thought to be the cause of the autoimmune symptoms—then began to rapidly deplete as well. Just six months after the treatment, Thu-Thao is in remission from her lupus symptoms, and has returned to playing sports.

20-year-old Thu-Thao is finally experiencing relief from her debilitating lupus symptoms, four years after being diagnosed.

“I can finally breathe properly and sleep through the night, and I no longer have any water retention, and the redness in my face has disappeared. My hair is also growing much more densely,” said Thu-Thao. She is also no longer experiencing heart palpitations: her heart rate dropped from an average of 115 to 130 beats per minute to 80 beats per minute.

The scientists at Universitätsklinikum Erlangen, the German university where the CAR-T treatment was administered, are pleased to see positive preliminary results in a patient with lupus.

“We see this as a milestone in the therapy of autoimmune diseases,” the scientists commented. They are now planning a clinical study with CAR-T cells in more patients with autoimmune diseases.

To read more about this new immunotherapy and the research being done at the Universitätsklinikum Erlangen, read the full article.

FDA Approves Drug to Treat Rare Autoimmune Disease

The U.S. Federal Drug Administration (FDA) has approved a drug manufactured by ChemoCentryx to treat a rare group of autoimmune diseases, called anti-neutrophil cytoplasmic autoantibody-associated vasculitis, or ANCA-AAV for short. According to ANCA Vasculitis News, ANCA-AAV causes inflammation and damage to the body’s small blood vessels. This inflammation is the result of antibodies that bind to certain cells of the immune system, called neutrophils, and overly activate them.

Since small blood vessels are found throughout the body, ANCA-AAV causes a variety of symptoms, including:

  • Poor kidney function, leading to kidney failure
  • Severe respiratory problems, including shortness of breath, hoarse voice, cough with blood or mucus, and chest pain
  • Neurological symptoms, including tingling, burning, numbness, and weakness
  • Central nervous system (CNS) involvement, such as headaches, cognitive impairment, and memory deficits. In severe cases, seizures, paralysis or loss of consciousness may also result.
  • Ear, nose, and throat (ENT) symptoms, like sinusitis, nasal discharge, rhinitis, and tinnitus (ringing in the ears)
  • Eye symptoms, including eye pain, vision impairment, and vision loss
  • Joint pain, muscle pain, and muscle loss
  • Skin lesions, including rashes, sores, ulcers, bumps, and bleeding underneath the skin
  • Digestive problems, like vomiting, diarrhea, nausea, abdominal pain, and blood in one’s stool
  • And more…

Due to the numerous symptoms ANCA-AAV causes, it can often be fatal for patients; in fact, ChemoCentryx states that the first year mortality rate for patients living with the disease is between 11 and 18 percent. Current ANCA-AAV treatments on the market include steroids and immunosuppressant medications which compromise the body’s ability to fight off infections. That’s why having a new treatment on the market that works via a different mechanism may be a saving grace for many ANCA-AAV patients.

The new drug, called avacopan, will be sold by ChemoCentryx under the brand name Tavneos. It works by blocking a protein called C5a receptor that is responsible for causing numerous inflammatory diseases. The drug’s wholesale price will be an astronomical $150,000-$200,000 per patient per year. However, it could be the life-saving treatment that the 40,000 ANCA-AAV patients in the US need.

The drug is currently being tested for use on other conditions as well, including the autoimmune skin disease Hidradenitis Suppurativa (HS). The drug has already received approval for commercialization in Japan, and is expected to be approved in Europe by the end of 2021.

Martina, a 29-year-old mother-of-two from Stuttgart, Germany, describes what it was like being diagnosed with this challenging autoimmune condition:

“It began rather unspectacularly, with flu-like symptoms, fever, headaches, and joint pain. So anyone would think, ‘It’s just a normal flu.’ Then it got worse over the course of a week and I went to the hospital.”

She was eventually diagnosed with ANCA-AAV after undergoing a series of blood tests. Unfortunately, she had to give up her career as an educator in the process, since she didn’t have a strong enough immune system to be interacting with children while taking steroids and immunosuppressants to control the disease. Patients like Martina are the ones that could potentially stand to benefit from new drug therapies like avacopan.

Martina, 29, appears in an ad to raise awareness for vasculitis conditions.

To find resources for those living with ANCA-AAV and their caretakers, visit: https://www.myancavasculitis.com/living-with-aav/