4 posts tagged “autoimmune condition”

“Smart” gear for cold hands due to Raynaud’s?

Posted February 20th, 2019 by

Member Julia (mjguimaraes), a product designer in Montreal who’s living with Raynaud’s disease and multiple autoimmune conditions, is creating hand-warmers and other smart gear intended to help patients. She even involved fellow PatientsLikeMe members in shaping her first product. What’s in the works? Check it out!

TotumTech hand-warmer

Helping (cold) hands

Julia is originally from Brazil and began to notice symptoms of Raynaud’s while she lived there (especially in air-conditioned spaces), but her symptoms got much worse when she moved to chilly Canada. Doctors officially diagnosed Julia with Raynaud’s disease three years ago. She’s also living with rheumatoid arthritis, asthma and other conditions.

Raynaud’s is a vascular (blood vessel) disorder that causes ischemic attacks (lack of blood flow), usually in the hands and fingers, feet and toes, ears and nose. This makes them feel cold, numb and/or painful and turns them white or pale.

“Winter is when it becomes really hard to cope with,” Julia says, but she noted that it’s an issue year-round because of air conditioning.

“When you have an attack, it isn’t only your fingers, your entire body feels cold,” she says. “Even with a lot of layers, it’s not enough. When you’re at home, you can find a lot of blankets. When you’re working, it’s hard to find ways of coping. I see that my production slows.”

Julia’s product development work is a side job for now. Her day job is a UX (user experience) designer, so she frequently needs to use her hands. But having cold hands means it’s harder to type because her fingers don’t respond as expected. So she spends a lot of time finding ways to get warm, from standing up and moving around to getting hot coffee.

“It looks like half of my day is about looking for ways to warm myself,” she says.

She needed something smarter — beyond blankets and beverages — to warm her extremities.

smart hand-warmer prototype

From project to product

Julia was a student at Concordia University when — with Raynaud’s in mind — she came up with the idea of a “smart” hand-warmer for a project for her class called Wearables. Her program, Computation Arts, “explores the intersection of design, art and technology.”

“I had so much good feedback [in class],” she says of her hand-warmer project. “Then one day I thought, ‘Wow — why couldn’t I find a way of having these available for people?”

Sensors and smart technology are all around us, so Julia wondered, “Why not make something that helps us [our bodies] as well?”

Julia has teamed up with two partners to launch a small company called TotumTech, with the “Hands-On-Warm” hand-warmer as the first product they’re spearheading (with hopes to expand to other products and health conditions later on).

Her two partners live with and are caregivers to people with invisible illnesses, so they have their own experiences with understanding day-to-day life with health conditions.

“It’s hard because people look at you and don’t think you have a disease: ‘You look well. You look great. Why are you telling me that you’re sick?'” Julia says (echoing other PatientsLikeMe member’s experiences). “It’s hard for people who have these kinds of problems.”

“That’s why our focus is on these people,” she says. “Our value proposition is that we are looking to [help] people with invisible disabilities — to help them cope with their limitations, regain their productivity, have relief, and improve their quality of life.”

PatientsLikeMe member feedback

Julia’s first prototype of the hand-warmer was a proof-of-concept of her invention — a wireless, fingerless glove with built-in hand-warmers — and it worked well for her personally, she says.

Seeking to research other patients’ perspectives (and not promote an existing product — an important distinction per our user agreement), Julia sought permission from PatientsLikeMe to ask members in the forum for feedback on their Raynaud’s disease and her product idea.

“It was great that people were super-interested,” she says, noting that members were very open and some want to get involved in user testing.

By end of winter, Julia is aiming to finish the second (“smart”) prototype of the hand-warmer — which users should be able to control using their smartphone and set up their own comfort levels for different environments. In the spring, TotumTech is hoping to start user testing with the product. Then by summer, the business might launch a Kickstarter campaign.

Julia wearing TotumTech hand-warmer

“Comfortable and confident again”

Talking with fellow patients further fueled Julia’s interest in making in product a reality. Medications are just part of the picture in treating many conditions, so people are seeking different solutions to problems in their daily lives.

“We constrain ourselves from doing things because we are concerned about being cold,” Julia says of people with Raynaud’s. “My hope and my goal would be that this product will help people to regain this confidence and say, ‘OK, I can go to this place — I can go to a cinema and not freeze…and go to the frozen foods section and make my choice of food, without wearing full gloves.”

The current model of the “Hands-On-Warm” device fits under knit fingerless gloves or cuffs. TotumTech is working on designing different models to make them even more discreet.

“So my goal is that we can feel comfortable and confident again that our limitation is under our control, and not the other way around,” she says.

What kinds of inventions or devices could help you live better day-to-day with your condition and symptoms? Join PatientsLikeMe or log in to talk with members about this topic! Connect with Julia on PatientsLikeMe or through her company website.

What’s the lupus/kidney connection? Our healthcare pros explain lupus nephritis and more

Posted September 24th, 2018 by

“Kidney” is one of the top terms that PatientsLikeMe members are searching for in the lupus forum (click here to join the site for forum access). Last year’s news of Selena Gomez’s kidney transplant put a spotlight on the lupus/kidney link. Lupus can affect your kidneys in a few different ways, so we asked our Health Data Integrity Team (our in-house clinical healthcare professionals) to help us learn more.

What is lupus nephritis?

Lupus nephritis is an inflammation of the kidneys caused by an autoimmune response. Lupus can cause an autoimmune attack on various parts or tissues in your body, including the kidneys. During this attack, the immune system turns on itself and tries to fight off “foreign invaders” — which are actually your body’s own healthy cells. This can trigger inflammation and swelling of the tissue in an attempt to eliminate foreign bodies.

Lupus nephritis can impair the kidneys so they’re not able to properly remove waste or control fluids in your body. Left untreated, nephritis can lead to more serious kidney disease. Cases may range from mild to severe, depending on the signs and symptoms and what areas of the kidney are involved.

Here are some symptoms of lupus nephritis:

  • Unexplained swelling in your feet, ankles, legs, fingers, arms or eyelids
  • Unexplained weight gain
  • Blood in the urine, or urine that looks foamy or frothy
  • Increased need to urinate, especially at night
  • Headache and/or dizziness
  • High blood pressure

Should you get screened?

About 50 percent of people with systemic lupus erythematosus (SLE) develop lupus nephritis, so all patients with SLE should be regularly screened for signs of nephritis. Not everyone will have the symptoms listed above, so screening tests can be helpful in diagnosis. Screenings may include:

  • A kidney biopsy — A tiny piece of tissue is removed and examined under a microscope to determine if there is any scarring or inflammation in the tissue.
  • Urine tests — An abnormal urine test may show there are cell fragments or proteins in the urine, which may signal improper filtering in the kidneys.
  • Blood tests — If the kidneys are not properly functioning, there may be excess fats and other small molecules present in the blood.

How is lupus nephritis treated?

Although lupus nephritis is a serious condition, it can be treated. The goal of treating lupus nephritis is to return normal kidney function and prevent any further kidney damage. Treatments may vary depending on the severity of the disease, but two options are:

  • Steroids such as prednisone, to help reduce the inflammation.
  • Immunosuppressive drugs (either in combination with steroids or alone). These drugs help suppress the immune system and further reduce inflammation. Immunosuppressive drugs may include cyclophosphamideazathioprine and mycophenolate. Although cyclophosphamide has some significant kidney-related side effects, it may help prevent lupus nephritis from getting worse. With proper dosing and monitoring by your healthcare provider, you can properly manage and minimize side effects.

Other lupus-related kidney issues

Other kidney disorders can occur as a result of lupus itself or as a side effect of treatment. For example, immunosuppressive drugs taken for lupus can weaken the immune system and increase your body’s susceptibility to infections, particularly urinary tract infections (UTI).

UTI symptoms may include frequent urination, pain or burning during urination, and urinary urgency. If left untreated, the bacteria from the urinary tract infection may travel up into the bladder and kidneys, causing more serious infections that may be harder to treat. If you experience any of these symptoms, let your healthcare provider know immediately in case you need antibiotics to treat the infection.

Some medications used to treat lupus may also cause signs and symptoms of kidney impairment that may be similar to signs of lupus nephritis. Each of the drugs used to treat lupus have their own set of unique side effects, most of which are manageable. If you have any specific questions regarding the risks of the medication you’re taking, ask your healthcare provider for a more detailed and individualized explanation of how your medication can affect you.

It’s important to tell your provider about any new symptoms you experience because they may point to lupus-related complications. Also, remember to consult your healthcare provider before starting any new medications or stopping your treatment.

Are you living with lupus and kidney problems? Join PatientsLikeMe or log in to connect with thousands of others who can relate.

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