Introducing Our Newest Addition: autoinflammatory-search.org!

Screen shot 2015-09-23 at 10.45.41 PMWe are pleased to announce that our dynamic, autoinflammatory disease search database, based on our comparative chart is now ready for all to use at autoinflammatory-search.org! This project has been highly anticipated, and we hope that everyone will find it helpful, and that it will help more doctors and medical professionals, and also patients searching for information to learn more about autoinflammatory diseases.

There are 39 diseases on the site as of 2015, and we will likely be adding a few more soon! This new site allows us to constantly update, add content and new research findings, and newly classified autoinflammatory diseases much faster than with our print or pdf version. Plus, it is a lot easier to see on the screen, and all the references are hyperlinked so you can go right to the source immediately.

Currently, the site and search system are in “beta mode” and are still being refined and improved, but we wanted to get this site out to the public now, since our original comparative chart of systemic autoinflammatory diseases needed to be updated, and it is so much easier to use this new database and interactive chart.

First, let’s talk about this new, comprehensive digital  chart of systemic autoinflammatory diseases

You will first note that there are many options across the top heading area (white type on the black background) when you arrive at autoinflammatory-search.org.

The Full Comparison Chart heading will bring you to our newly updated, comprehensive digital version of our comparative chart of autoinflammatory diseases.

Clicking on the number in the brackets on the chart (for example: [1]) will bring you to the medical journal or resource reference, and a number of these links go directly to a full version of the article, or detailed abstracts.

You will need to scroll from left to right and down the page to view the entire chart content, but you can also click on the disease name or “Learn more” in blue on the left side of the page to view the diseases as vertical pages of content. These pages can be scrolled through, like a book, or you can return to the comparative chart format.

Here’s a short tutorial on how to use the search features in autoinflammatory-search.org

Screen shot 2015-09-23 at 10.45.57 PMClick on the top white text in the black bar that says “Symptom Search.” This will bring you to this screen, where you can search for content in the chart in a few different ways.

  • Free text typing of disease symptoms. We recommend using medical terminology and correct spelling to maximize the current search, as it is still being refined.  You can list off the most prominent symptoms into the search box where the blue arrow is pointing in the image. Searching for the more unique symptoms or lab results a patient has, such as “hearing loss” or “vaccine triggers” will get you a more refined list. Searching for common symptoms, such as “fever” or “rash” will get you a long list of possibilities.
  • Or you can choose from the “Common Symptoms” list on the bottom of the search page. Hold down the command or Windows key on your keyboard to select all the terms that you want in the search.
  • You can also search by disease names in the search area in the middle of the page. Select multiple diseases by holding down the Alt/ Command buttons on your keyboard.
  • Note that the “search by gene” area is in the process of becoming operational and will be usable soon.

 

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Search results options

After the search is completed, you will see a list of diseases on the screen. You can select the diseases (in blue) to view each disease as a full page, or you can view all the diseases that came up in that search in a “head to head” chart format to compare symptoms.

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What do I do if the search says “None found?”

At this time, the search system is still being refined, and we are in what is known as “beta mode” to test the site, and work on improving it.  We need more funding and support to be able to make this site better, and it will happen, but we wanted to have this available for now, while we work on making updates. Thanks for your patience! If you would like to donate to help us improve this site and for other projects, click here.

Note that a patient may have one of these diseases, but may not have all the known features and symptoms, or they may have additional symptoms that are not common, or listed in the literature. This can affect search results.

Not getting a result with a search does not rule out an autoinflammatory disease diagnosis.

If you get a “none found” result, try a few different searches, or review the full chart to see if any of the diseases have other features your patient has.

Try doing a more simple combination of symptoms, or pick one highly unusual symptom and search for that on it’s own. For example, “hearing loss” will bring up all the diseases that have that symptom.

We have tried hard to have accurate, up-to-date and comprehensive information for this database, but some diseases are very newly classified, so there is very little information about the disease in the literature. As more findings are discovered, we will add to the content on this site. You may get a “none found” because your patient has symptoms that have not yet been listed in the literature.

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Donate NowWe Need Your Help!

This sort of database has not been developed for autoinflammatory diseases before, or any other diseases for that matter with a comparative chart, so this was a new challenge for the Autoinflammatory Alliance  and we have more to do to make it even better. Future plans include having it translated into multiple languages and to include more features, but we need your support. We need to raise more money to continue developing this online database and for the costs for hosting and maintaining the site going forward, so we hope that people will use the donate button in red on the site to show their support, or you can donate to the Autoinflammatory Alliance anytime on our website. It is essential to this project that we get more funding, and all donations are welcome, and will make a big difference.

Thank You to Our Expert Contributors, Donors, and Sponsors!

We are very thankful for the help on the initial development for this site, including guiding which diseases to focus on for this project, and on the original Comparative Chart of Autoinflammatory Diseases by a number of experts on autoinflammatory diseases, including: Dr. Scott Canna, Dr. Arostegui, Dr. Nico Wulffraat, Dr. Luca Cantarini, Dr. Mikhail Kostik. Dr. Anna Simon, Dr Joost Frenkel, Dr. Hal Hoffman, Dr. Raphaela Goldbach-Mansky, and many others. Their help has been incredible and we are thankful for their voluntary efforts for this cause.

The autoinflammatory-search.org site creation, programming and content development was made possible thanks to unrestricted grant funding for autoinflammatory-search.org by Swedish Orphan Biovitrum (Sobi) and by many donors from the public and patient community. The original printed chart project was supported by an unrestricted grant from Novartis Pharmaceuticals Canada. We also want to thank Black Peacock for the design and programming of the site, and for all their hard work, and the thousands of hours spent by some members of our Autoinflammatory Alliance board on this project.  There is still more work to do, but getting this to this point has been a major undertaking, and labor of love by many people.

What’s in store for autoinflammatory-search.org in the future?

More funding and support, including volunteer technological help is welcome so we can make this resource even better! Some of our future plans that we want to work on, once we get the funding are:

  • Photo gallery to feature more than one image per disease and the ability to search the gallery to compare the diseases.
  • Translation into other languages for this site, and for a PDF printable version of the new chart. This is a much-needed and expensive, time-consuming undertaking, but one that will help people globally to get help for their disease, and for doctors to learn more about these rare diseases.
  • Improved search options, expanded resources, and downloadable patient materials.
  • Integration and updates of our current autoinflammatory.org website to be more connected to autoinflammatory-search.org and our blog here at saidsupport.org.
  • And much more!

Thank you for your interest, and please let us know how we can make this better and what you like about it.  We really appreciate your support.

Donate Now

Winter Tips for Those Whose Autoinflammatory Disease Symptoms are Triggered By the Cold

There are several Autoinflammatory/periodic fever syndromes that have flares triggered by cold or cooling temperatures. These syndromes include cryopyrin-associated periodic syndromes (CAPS), such as familial cold autoinflammatory syndrome (FCAS) and Muckle-Wells syndrome (MWS), NLRP12/FCAS2, PLCG2-associated antibody deficiency & immune dysregulation (PLAID), and others. (For a list of autoinflammatory diseases in which cold is often a trigger for flares, click here.) According to The CAPS Guidebook, “Cold foods, air conditioning, weather changes or swimming can set off fevers, rashes, aches, and conjunctivitis.” This can make winter, or even working in a climate controlled office with air conditioning, challenging for some auotinflammatory patients.

Here are some tips and recommendations made by patients with various cold-induced periodic fever syndromes to help reduce symptoms in the winter or when in cool temperatures.

cold urticaria clothing

This WinterSilks shirt is silk and washable.

WinterSilks Clothing

Several recommended wearing long john undergarments, layering your clothes, and just keeping skin covered in general so it doesn’t get cold. One of the most recommended clothing brands for this is WinterSilks. The undergarments are made of 100% silk making them warm yet thin – perfect for layering. They are also washable and will last many years with normal wearing. WinterSilks makes several clothing items, including t-shirts, turtlenecks, and sleepwear.

 

heated long sleeve shirt green

This long sleeve shirt has hidden heating panels. You can find it on Amazon.

Heated Clothing

There is an assortment of battery heated clothing you can wear from jackets, shirts and socks, to insoles for your shoes. Many will even have different heat settings. In some cases the battery pack and charger are sold separately, so make sure you read the product description carefully when ordering. Also read the cleaning instructions. Many heated clothes cannot be washed in a washing machine because it will damage the wiring. Click here to see what Amazon has to offer in its heated clothing department.

 

white matress pad heater for winter

This heated pad is highly rated on Amazon.

Electric Blankets and Mattress Pads

Many say having a heated bed is a must. Not just to prevent flares, but to help with aching joints and muscles as well. This Sunbeam quilted heated mattress pad pictured is highly rated. It has 2 controllers, one for each side of the bed, 10 heat setting levels, and it automatically shuts off after 10 hours – so you don’t have to worry that you left it on when you left the house. It’s quilted so you shouldn’t feel the wires running through the pad.

 

long lasting hand warmers for winterHand Warmers

This is what one mom of a child with a periodic fever syndrome had to say about hand warmers:

These hand warmers are a must for us! R. enjoys sledding at least once during the winter months and his sister loves to ice skate. The hand warmers in his gloves/boots keep his fingers and toes from swelling too badly.

Keep some hand warmers in your car, at the office, and/or in your purse so you can have something warm available anytime. Most hand warmers will stay warm for 6 to 10 hours depending on the brand. One thing to keep in mind, when activating the warmer, it does need to be out in the ambient air for usually 15 to 20 minutes to fully activate. If you put it into your shoe or glove too soon, it may not be as warm or last as long as expected. Most unused warmer packs have a long shelf life, so you can save money by buying in bulk.


Let’s Talk Bananas, Money, New Friends,….and Single Life with a Sick Child

Will suffers from SoJIA/Still's disease. His sister Carmen is a big part of his team, helping him fight SoJIA.

Chronic illness affects the entire family. Will with his sister Carmen who is a big part of his team, helping him fight SoJIA.

What does it do to a single parent when a child is diagnosed with a chronic illness?

I won’t pretend to know what effect a chronic illness has on a marriage. My marriage was over before my son was diagnosed with systemic onset juvenile arthritis (SoJIA). If it hadn’t been, I’m sure the SoJA would have been the nail in our marital coffin. I can however, describe in detail how the life of a single parent can change when a child is suddenly no longer healthy. I have lived that life for almost 7 years now.

I don’t share this for sympathy or help. I know lots of people walking this journey who have not just sympathy, but empathy. And I know where to turn if I truly need help.

I share this for a deeper reason. To give you a glimpse of what single life is like with a sick child. When you’re the only caretaker, life suddenly gets exponentially harder. If you are living this life, please know you aren’t alone. If you know someone in this situation, this may make it easier to understand them.

Let’s start with the one that is the hardest to discuss. Money. Whether or not money was tight before the diagnosis, I can guarantee there will be struggles once you add in the cost of co-pays and deductibles (assuming you have insurance), travel to doctor appointments, meals eaten away from home because you either aren’t home or are just too busy, the wear and tear on your car, and adaptive devices designed to make your child’s life easier or less painful. Your quality of life will not be the same. It gets even worse if your job does not allow for adequate time off (that is, if you get paid time off to begin with) to attend all the doctor appointments, specialist consultations, physical therapy, counseling sessions, school meetings caused by medical concerns, and time spent caring for a child who is too ill to be away from home. The added stress can cause health problems of your own. Being sick is expensive.

Having a chronic illness in the family makes everyone a little bit cuckoo bananas. You can’t afford vacations; you use your vacation time on medical attention, and you have to adjust the plans that you do make. Insurance, scheduling, budgeting, and family time pull you 7 different directions. So-called friends drift away because being there for you is inconvenient. You may not be able to continue the activities you once enjoyed. Throw in a child with constant pain or other medical problems, a sibling who is both jealous and concerned and possibly sick themselves, and an ex who doesn’t understand why your child isn’t cured yet, and you have the recipe for a dysfunctional family life. If you don’t have family or friends close that can help, you become exhausted and burned out.

Education becomes a challenge. Your child will miss school. Period. They may have attendance problems and behavior issues (whether from pain or medication side effects). They might be fatigued, get sick a lot or take longer to get well. School personnel may not believe your child has an invisible illness, or they might not understand why they can seem fine one day but not the next day. You may have to fight for accommodations you are legally entitled to. You may have to make the impossible choice between constantly battling the school and homeschooling while working full-time and being a caregiver.

There is also an emotional adjustment that you must make to a new way of life, while grieving the loss of your healthy child. Suddenly your hopes and dreams for your child and his future are gone. You may feel undeserved guilt. You must learn to discern when your child is truly struggling and when they are “using” their illness to gain attention or special treatment. You may have another child who needs your love and attention more than ever. Siblings may develop behavior problems. There is a high incidence of depression and anxiety among family members and caregivers. You must learn to swallow your pride and ask for help. That is after figuring out what help you need.

But please don’t think it is all gloom and doom. You and your child(ren) become closer, stronger, and more compassionate. You meet some amazing people. You make instant friends that last a lifetime. You find new entertainment options. You are more grateful for the good things in life. You learn to adjust your expectations. You model these new skills for your family. You thrive in spite of your circumstances. You learn to stop and smell the tulips.