The daily skin care treatment for ichthyosis requires using large amounts of emollients on the skin. This is great for the skin, but can be very harsh on washers and dryers. Below is collection of tips, provided by FIRST members themselves, regarding best tips for use and care of washing machines.
Washing Machines: Tips for Use and Care
- Standard front loader washing machines cannot sustain a large amount of suds, so it is difficult to add any other type of product, other than standard laundry detergent. Grease from Aquaphor also tends to ruin the rubber gasket in front loaders. Larger, industrial machines, like those found at the laundromat, may be an option as they are adaptable to far more cleaning agents and hold much more water, which is better for removing grease and moisturizer.
- Purchase a second washing machine to use for clothes stained and soiled with skin care product. Inexpensive, pre-owned units can be found online. (Try your local Facebook Yard Sale Groups!)
- Remember to scrub the inside ring first! Then fill the washer with ½ to 1 cup of cleaner such as Simple Green and Dawn dish detergent and hot water; shut it off for 30-60 minutes to start breaking down residue, restart to complete the full wash cycle.
- Run an empty washer with two tablespoons of baking soda and two cups of clear vinegar.
- Remember to scrub the inside ring.
For more information on Laundry & Washing Machine Care See FIRST Tips & Tools: Laundry Care
Can I Afford a Microbubble Tub?
The truth is…maybe. In recent months, there have been many online discussions, comments and questions regarding the benefits and cost of a bath tub that utilizes microbubble technology. Many FIRST members have tried the tub with positive results with regard to skin removal, and many who have not had the opportunity to try the tub are curious to see if it might help with their condition. We gathered some facts and figures from the FIRST community to help you decide whether or not this is the right pursuit, and if so, how you might offset the costs.
Firstly, as many of you know, bathing and exfoliation is one of the best ways to care for the skin of those with ichthyosis. Bathing is very important to the shedding process, as it not only cleanses the skin of dirt and other external debris, it completes the natural process of shedding, or sweeping away of spent and finished epidermal cells. And bathing frequently can make a world of difference in caring for your condition. The technique of microbubbles is relatively new to our community, and to date, there has been no medical research to support the statement that the microbubble technology is specifically beneficial for those affected with ichthyosis. FIRST does not recommend any particular type of bathing since ichthyosis is very individual to each person and results vary widely. Whether or not a tub featuring microbubble technology is useful, or the best solution for your skin condition, is a very personal choice. Therefore, it is highly recommended that you consult your medical practitioner prior to beginning a new skin care routine.
The cost of purchasing and installing these types of tubs, for many, would be considered a large expense (approximately $3000-7000, depending on the retailer and the cost of installation). However, discounts for children may be available, so be sure and inquire prior to making your purchase. Additionally, there may be some opportunities for seeking financial support. As a service to our members and for those contemplating the purchase, here is a suggested list of ways to find out more about the tub as well as to possibly find financial assistance:
Sample the Tub before Making a Purchase
One member went to a spa with her affected son, where she knew the microbubble tub was available to sample. This is a great way to see if this is a purchase worth pursuing. Also some distributors will have sample tubs on display and it would be well worth a visit to do some research before considering a high-cost, risk purchase.
Contact Your Medical Insurance Company
Sean and Jolie Cina, whose two children are affected with ichthyosis en confetti, shared their experience – “We purchased a Microsilk® tub last spring as part of a bathroom renovation from an online retailer, paying $2,853, when it normally sells for over $4,000. Once the renovation was complete, we decided to attempt to seek reimbursement from my insurance company (Aetna). We only looked for reimbursement for the actual tub, not installation, as we thought that would be difficult to substantiate since the entire bathroom was remodeled. Here’s what we included in our paper claim:
- Insurance Cover Letter. We were sure to review the insurance company’s policy on durable medical goods.
- Claim form from the insurance company
- Letter of recommendation for therapeutic baths from a dermatologist we work with
- Every medical record pertaining to our daughter’s skin from day one. This is the most important part. We knew that this claim would go into medical review. Once this happens, the insurance company will deny and/or ask for records. We decided to send them all at once to help speed up the process. It is best to include every record from every visit to any doctor pertaining to the person’s skin.
Overall, the entire package was about 40 pages. We then monitored the claim online and contacted customer service about every two weeks to follow up. Make sure to take notes on who you speak with and what they say. We filed the claim only one time, and did not have to appeal. We successfully received 70% reimbursement for the cost of the tub.”
Ask Your Community for Assistance with the Install
After the purchase of the tub is made, the other tricky and costly expense is the installation, and possible bathroom remodel. Reach out to your community and see who might be available to volunteer. Your church, community center, school, library, or healthcare practitioner may be of assistance in seeking volunteers. Also, contact your local media and let them know of your situation, as they may be able to heighten the reach of your message. In addition to helping your family, you’ll be raising awareness for the entire ichthyosis community.
Keep in mind, you may need a contractor, carpenter, plumber, and possibly an electrician, architect and/or home remodeler. At the very least, a local contractor might be able to help with the install at cost, once he is aware of the rare skin condition affecting you and your family.
Once the community is aware of your situation, you might be surprised who will step up and help. Be sure you use certified pros and a solid plan of execution before any tub purchase is made.
Raise Funds, Specifically for the Tub Purchase
There are many online fundraising platforms that can be used through social media (i.e., Gofundme). Tell your story and share it with your online community. Or you can hold a traditional grassroots fundraiser – a bake sale, fun run, coin collection etc. Many people, once they are informed, are more than willing to support your cause. Be very specific about the amount of money you’ll need and be sure and keep your community informed of the progress, purchase, and the outcome. Share photos of the entire endeavor! They’ll want to know their donation was used as promised, and that they have made someone’s life that much easier.
If you are interested in learning more about microbubbles, Microsilk®, or connecting with someone who has had a successful experience, please contact Moureen Wenik by phone at 800-545-3286 or email at firstname.lastname@example.org.