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"Confetti Skin, Beauty Within" is our blog about ichthyosis and its effect on our lives. Rachel and our three boys are affected with the form of ichthyosis called "icthyosis en confetti, type 2".

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Here's our summary of our best and most important posts of 2012.

Free Aquaphor for patients with ichthyosis from Beiersdorf

Half of the cream closet.

Caring for ichthyosis is expensive. What could possibly be so expensive about skin care, you ask? It’s not like we’re visiting the Clinique counter at Saks every week.

Let’s talk about the cost of creams. (Full discussion of all of the other costs could take up an entire series of posts on their own.)

Even with health insurance, prescription medications are very expensive. Rachel uses a dab of Tazorac about once a month, and the older boys get it every now and then, too. Without insurance, Tazorac is about $500 a tube, and even with insurance our out-of-pocket payment is well over $100 a tube. The cost of other prescription medications such as Soriatane (acitretin) is very high, too.

Setting aside our occasional use of the prescription meds, we go through a huge amount of moisturizing cream and lotion. Apply liberally to the entire body, at least once a day, with more frequent use “as needed”.

One thing we hear often when we go out is, “Wow. Your son’s hands are dry. You should put some cream on that.” Sometimes, they even pull a small tube of something and offer it to me. That offer is even funnier when it’s made while in line at Costco, when there are 3 cases of cream ($15/jar, 12 jars per case, total cost of cream in the cart $540)

Um. Ok, I’ll get right on that.

So yes, we spend an awful lot of money on cream.

Beiersdorf, the company that makes Aquaphor, Eucerin, Nivea and Hansaplast, has offered a program for several years now where they will send a free case every three months to someone affected with ichthyosis, epidermolysis bullosa, and other severe skin disorders.

Yes, FREE.

All you have to do is talk to your doctor and ask them to send Beiersdorf a letter confirming your diagnosis and what you use to treat it (hint: the name of a Beiersdorf product goes there) and ask to be enrolled in the program. Then you call up the customer service number and tell them what product you want and they ship a case to you. Three months later, call again for a refill (you don’t need a new letter), and it’s on your doorstep the next day.

Beiersdorf, you are a wonderful company and are performing an amazing service to the ichthyosis community. I know families that were on disability and limited incomes that were not treating their skin because of the cost of the lotions, and this program has made a real, positive impact on their lives. Our own family spends half as much on cream as we do on groceries every month. Your generous program has made a real impact on us and I cannot thank you enough.

(Disclosure: We participate in the Beiersdorf program and receive Aquaphor and Eucerin from them.)

Contact numbers: Have the doctor fax the letter to 1-800-645-1391. The general customer service phone number is 800-227-4703.

UPDATE 11/5/12: I called customer service and was told that this program is only available in the United States.
UPDATE 6/24/13: The new fax number is listed.

14 comments to Free Aquaphor for patients with ichthyosis from Beiersdorf

  • De De

    I don’t know what we would do without Beiersdorf. It is such a relief knowing a case will be coming every three months. Aquaphor is literally keeping Evan alive. I don’t even know how stressed I would be if we had to purchase it all. We use at least 2 tubs a week and Evan is only getting bigger! So grateful to this company!

  • rachel

    OMG, this is too funny. After we posted our blog entry, @AquaphorUS on Twitter announced a contest this morning — “#Giveaway Alert! Tell us why you love Aquaphor for a chance to win some Lip Repair SPF 30! “. So there’s Aquaphor love everywhere today. See http://twitter.com/AquaphorUS/status/250619772033720322

    Also, Jennifer and I are on Twitter @ConfettiSkin, follow us there for some interesting conversations. I had an interesting conversation in French this weekend about harlequin ichthyosis, yay Google Translate.

  • Peggy

    We love this Program. Because of the severe skin buildup on Andrews feet, and severe fissuring, his Derm Dr will be providing the makers of Aquaphor with his info so that he can be placed on the program. I would always use Vaseline on the boys when they were younger, but since using the Aquaphor we’re seeing less and less fissuring, which makes for a much happier person. I know of some other Mom’s on the XLI Board, and their sons are on the program too. Thanks Beiersdorf for making such an awesome product.

  • Pati

    It is amazing what perfumes and soaps and additives in various lotions have done to my sons skin.
    We go through so much aquaphor . We have also mixed aquaphor with bio oil and it gives it a more apealing texture for easy aplication on any exposed skin thrrough the day.what ever it is in the bio oil really helps my sons scalp too. We have not taken advantage or even known about the group who gives a case every three months. So I will call our pediatrician and get on this.
    Four years of ,at least a jar very two days plus bio oil at 20$ per tiny bottle every couple days. Plus only cetaphil not he sudsy kind the milky kind, a touch of j&j baby shampoo to exfoliate scalp and when my son really plays in the dirt, is very expensive. Not to mention the only
    Laundry soap that we can use on anything that touches my babies skin Dreft at twenty two dollars a bottle.
    My son is so beautiful . I thank you God for the gifts of our sons.the youngest child who manages thru his thin fragile skin to emanate a light,hope ,joy and brings so much to those
    whom we meet.the older who has always been empathetic ,sympathetic ,strong loving and through your gift of a second child ,has given our first the chance to shine as a fabulous big brother.

  • Jose Alberto Ortiz Osalde

    Hello, excuse me , I just want to know if the Program include Other countries like Mexico. I heard about the amazing lotions but sadly I can’t get I’m Mexico and I think it’s expensive inclusive for me that I have a Job. Can you answear my doubt? Please

  • Jennifer

    I don’t know if it is offered in other countries. Here is the link to their international websites. I would call the one that is local to you and ask about it.

    http://www.beiersdorf.com/Contact_Service/International.html

  • joyce Hooker

    Hello, I work for a pediatric office in Dalton Ga. We would very much like to recieve samples in our office.
    Thank you so very much
    Joyce Hooker, Office Manager

  • Robin

    Thank you for letting us know about this program. I have three boys with ichthyosis and as someone mentioned above, my boys just keep getting bigger and need more and more lotion to cover their growing bodies.

  • Nancy

    I’m truly grateful for this wonderful program! I don’t know what I would do without it now. It has relieved my husband and I of much stress since we were found out about this to this program months after my son was born with Harlequin Ichthyosis. =)

  • hi, I saw free Aquaphor, which sent to those who have the sickly ittioso..have from little and What I have not tried for softener the skin but does not help me anything,,, i live in italy if your organisation can send me aquaphor in italy???or also here is free quaphor for ivhthyios patients??

  • Charmaine Dautremont

    Took me way to long to read your blog….. I sent an email requesting to be included maybe they will broaden their genrosity. Heres hoping!! Since finding out Landons genetic results, it has been constant paperwork, phone calls, and investigative work. I am glad you have done this blog for all of those who are affected by ichthyosis, It really is inspiring and has me wondering could i have enough to write about and also blog about my son, my family and our journey with ichthyosis? Thank you for everything you do so much of my learning has come from the two of you!!!

  • Gaynor Baker

    Thank you sooooooo much for the info. My son and I both have ichthyosis and I’m going to see if we can get this offer. It gets very expensive buying the lotions all the time

  • Beth Bresnahan

    The fax # has changed again .. I just found out today. It’s 203-563-5940.

  • Liz Herrera

    Hi Everyone,

    I have a nine year old son with X-linked Icthyosis. I learned of this program from a Ichthyosis Facebook group today. Is this offer still available. We live in Texas. Thanks in advance.

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