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Posts tagged ‘ichthyosis support’

Not Enough Vitamin D Research for Ichthyosis Patients with Healthy Diet

In response to a recent research article published by the American Academy of Pediatrics, pertaining to ichthyosis and vitamin D deficiency, FIRST consulted with our Medical & Scientific Advisory Board (MSAB), to find out more about the possible connection.

As noted by MSAB member, Dr. John DiGiovanna, ”It is important to note that the children in this article (from India) had vitamin D so severe they had rickets, a skeletal manifestation of vitamin D deficiency. It is likely they were broadly nutritionally deficient. We no longer see that in the US.  Vitamin D testing is widely available, and supplementation to normal levels is widely encouraged by dermatologists-since we also highly recommend sun protection. Vitamin D can be generated from sun exposure, diet or nutritional supplementation. Although this is likely not relevant for most ichthyosis patients, however, vitamin D supplementation is very reasonable. Of note, there has not been extensive research on vitamin D supplementation for ichthyosis patients who have a healthy diet and are not suffering from vitamin D deficiency.”

Dr. DiGiovanna, also added, “The optimal levels of vitamin D are not universally accepted. The old RDA-recommended daily allowance was based on preventing rickets. So if you took that amount, you avoided deficiency and the bone problem. Recently some have advocated that larger amounts of vitamin D may help prevent other more subtle problems. So higher levels have been advocated. Since sun exposure is one way to get vitamin D, and since skin cancer is directly linked to sun exposure, there is increasing interest in oral supplementation to prevent adverse outcomes such as osteopenia, etc. Serum levels to measure vitamin D are widely available, and vitamin D oral supplements are in most multivitamins and available as vitamin D alone. A normal level of serum vitamin D is recommended for general health.”

Before taking any new vitamin supplementation FIRST highly recommends you consult your healthcare practitioner.

4 Top Tips for Surviving the Season to Socialize!



WestlakesMeeting new people at holiday gatherings can be a festive and fun way to celebrate the season. But for those with visible differences it can also present some uncomfortable challenges. Here’s some quick, easy tips (including some from FIRST member and blogger Courtney Westlake) to avoid awkward discussions or situations, and enjoy some good cheer all season long.

1)      Create a simple one-sentence explanation for new people you may encounter at a holiday party (or the forgetful.) Try something like, “I (or my child) have/has a rare skin condition, that isn’t contagious, but doesn’t allow my/her skin to function properly. It’s a bear in the winter months!” Try to keep it quick and simple, and move on to the next topic. After all it’s a festive atmosphere, not a medical conference, and most people will gravitate toward easy, light-hearted conversation in these situations. FIRST member Courtney Westlake (www.blessedbybrenna.com), says, “Sometimes, I’ll try to help a person relate to Brenna’s skin, and the winter can be a good time for that because a lot of people’s skin is drier in the winter. Finding a connection can help a stranger relate better. I might say something like Brenna’s skin gets much drier in the winter, just like a lot of people experience even without a skin disorder.”

2)      Host at your home – For the most part, neighbors, friends, co-workers and family will be aware of your condition. Hosting a party of your own can be a great way to avoid awkward questions or situations around the holidays.

3)      Get plenty of rest and relaxation and avoid the drama - The holidays combine high expectations, crazy relatives, strained relationships and extended time together. It’s the perfect recipe for drama. If the holiday gatherings are a little too woven with anxiety, feel free to say, “All the holiday hoopla is not great for me or my skin. I need to take a step back for a while.” It’s perfectly okay to step back from all the socializing, and enjoy some quiet time alone or with your family. Courtney Westlake also adds, “We’ve learned that if Brenna gets really run down, her skin suffers as a result. So keeping top priority on the health of her skin is also a great reminder for our family not to over-do it with the holiday activities.”

4)   Consider it an opportunity to raise awareness and educate  – If you feel so inclined, sometimes inquiries that arise in a social setting can be considered an opportunity to educate about ichthyosis, and perhaps even about FIRST.  If someone is interested in learning more, give them FIRST’s website address (www.firstskinfoundation.org) or phone number 215.997.9400. FIRST would be happy to provide them with more information.

In the end, it all comes down to understanding what works best for you, at the holidays or any other time of year, and simply informing a supportive community.

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FIRST Member Lists Top Ten Reasons to attend 2016 FIRST National Conference

I have attended four FIRST National conferences, with my parents in the ‘90s and now my own family. Every single time I learn something new, make new friends, and leave the conference bursting with energy and hope for the future of our rare disease. If you or a family member is affected with ichthyosis or a related skin type, this is an absolute “don’t miss” event. Here’s why…

1)   Meet the Medical Experts - The National Conference offers the rare opportunity to learn from ichthyosis & related skin type experts. Experts. There are only a few in the country, and you can meet them, one-on-one! Free, fifteen minute clinical appointments are even available!

2)   Surround Yourself with Affected Families & Individuals - For once, ichthyosis is the majority. You’ll see people with your type of ichthyosis in the elevator and in the halls. You’ll see skin flakes on chairs. You’ll see people putting lotion on everywhere. Kids will hold hands with others and feel comfortable. Through casual encounters, formal presentations, and in-depth conversations, you will feel it and see it: you are not alone. This, by itself, is a life-changing experience.

3)   Make Friends that Last a Lifetime - Dealing with ichthyosis can be very isolating, not only for those affected, but for parents of affected children. Many parents feel overwhelmed with everything that comes along with an ichthyosis diagnosis, and the “ichthyosis family” is a support network that runs far and wide. At the conference you will no doubt spark connections for a lifetime.

4) Get ideas - Did you know that some people use a Dremel drill for their feet? That sleeping with surgical gloves can help your cream work? That UV rays are good for some types of ichthyosis but not for others? The wealth of information at the conference is always astounding – both medical and firsthand trial-and-error. Some of the most effective treatments I’ve found have been from suggestions at the conference.

5)   Stay In-the-Know – You’ll hear all the latest in research, from the scientists themselves! You’ll learn what’s new with FIRST, and how to get involved. Plus, you’ll find answers to issues like making special accommodations at school, how to spot an infection, or finding the best way to explain ichthyosis to a classroom or employer.

6)   See Your Future – The conference offers the rare opportunity to talk with those ahead of your life stage. New parents with affected toddlers can meet happy and adjusted teens with ichthyosis. Young adults can talk with 30-somethings about what it’s like to get a tattoo, get married, or nurse a baby while having ichthyosis. Adults can visit with seniors and find out what issues and solutions they’ve found for aging with ichthyosis.

7) Inspire Others - Ichthyosis makes for people of dignity, generosity, and perseverance. Sharing your strength with other new parents, other affected people, and even the dermatologists can be empowering to you. I’ll never forget how strong I felt when I was able to lift up a room full of parents just by sharing my own story. I am proud to know I have lessened the burden of others with ichthyosis.

8)   Have fun!  - From dawn till dusk, and beyond, the positive energy of the conference is contagious. We smile nearly the whole time we are there. The sight of the children playing together in the childcare room makes me tear up with joy. It wraps up with a Saturday night dance party and talent show! Plus, it’s San Diego. The beach, city, and nature are all right at our feet. Sign up for the FIRST San-Diego bus tour! A great opportunity to see the city and have fun with new friends.

9)   Meet the FIRST staff  - Did you know Jean Pickford has been with FIRST for more than 15 years? FIRST is more than just an anonymous funding source for ichthyosis resources, or an anonymous author of “fact sheets”. You’ll have a chance to get to know the FIRST staff, and to encourage them in the work they’re doing.

10) Score Free Samples - Generous sponsors and companies that are working on products just for ichthyosis contribute massive amounts of freebies—many of them are full size. The “swag bag” you’ll receive is guaranteed to make you feel like a red carpet VIP, and give you a few more things to try in your treatment.

-Denise Eiser, FIRST Member

REGISTRATION is NOW OPEN: http://www.firstskinfoundation.org/content.cfm/Ichthyosis/2016-National-Conference-Information/page_id/1460

#FIRSTNC16

Why Donate to FIRST?

A fair and valid question. And, in fact, one of the most rewarding and exciting parts of the job, for the staff at FIRST, is to provide the answer. Likely you are already aware that donating to FIRST will ensure the continuation of the Research Grant Program, whereby the top investigators in the field of ichthyosis research will be supported in their pursuits to find better treatments and an eventual cure. However, as the global leaders in ichthyosis advocacy and research, it is not only our job to bring public attention to this rare condition and support the advancement of research, but to also embrace those living with ichthyosis today, and to help them live a rich, fulfilling, and healthy life. Your donations make this possible.Conf2014-TubBO-Melton-AS (5)

Did you know that one of the programs supported by your donation is our Regional Support Network (RSN)? The RSN offers numerous connection opportunities including regional meetings, family conferences, FIRST to Know conference calls, and access to an extensive network of ichthyosis experts. It is one of the many programs funded by individual donations, corporate appeals, fundraising events, United Way and CFC donations, and private grants. FIRST does not receive any governmental funding; it is solely funded by individual and private donations.

Perhaps you have even attended one of our events, been connected to a doctor or family in your region, or gained some insight about ichthyosis on a FIRST to Know conference call? If so, you may have a deeper understanding of the critical need for these types of personal connections, as well as the rare opportunity to build relationships with the top doctors in the field of ichthyosis. The RSN offers life-changing connections that may not occur in any other situation. Your donations make these connections possible.

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When asked about the importance of the RSN, and how it has changed the lives of so many, Program Director, Moureen Wenik, said,

“The ichthyosis community is a small and very close knit community. I have witnessed the relief people feel when they have someone to talk to who really understands what it is like to have a child with ichthyosis, or be an affected adult. It is great to talk to someone who ‘gets it’ and doesn’t have to explain ichthyosis. The RSN provides a safe place for families to connect, whether through social media, by telephone, or face-to-face at a meeting. Often they have never met another person who shares the disorder. The feelings of isolation for new moms, parents of children with ichthyosis, or affected teens or adults with ichthyosis, can be overwhelming. This support network gives people the opportunity to talk to others who have experience living with ichthyosis and to share their feelings with others who understand.” Your donations help improve the lives of those in the ichthyosis community.

The RSN is only one of the programs supported by your donations. We’ll be sharing even more amazing ways your support is making a difference.DSC03579

FIRST encourages you to take advantage of the many opportunities and resources available through our foundation. And, we thank you wholeheartedly for helping us to provide them for you, each and every day.

More information on the Regional Support Network.

Want the latest news from FIRST and the ichthyosis community? Sign up for FIRST E-News and Updates!


How Can I Prepare for My Visit with an Ichthyosis Medical Expert?

So, you’ve finally scheduled an appointment with an ichthyosis medical specialist, but have no idea as to how to prepare – no worries, our physicians will guide you step-by-step on how to have most effective visit possible.
At the FIRST National Family Conference in Indianapolis this past June, we sat down with Drs. Keith Choate and Philip Fleckman and asked them that very same question. Here’s a video clip of our interview, followed by a checklist of the critical steps necessary to prepare when meeting with an ichthyosis specialist.

• Educate yourself as much as possible, beforehand. The FIRST website is a wonderful resource with abundant information on the both the clinical and emotional aspects of many types of ichthyosis and related skin types.
• Bring the affected person to the visit only and leave the rest of the family at home, if possible. This will help with concentration, focus, and ensure that you cover all your areas of concern. The more relaxed you can remain, the more effective the visit will be.
• Discuss the situation with your spouse, or family members, that will not be at the doctor visit. Write a list of their questions and your questions, so you don’t forget anything, and bring it with you.
• Write a summary, journaling what your experience has been since you or your child was diagnosed. Reach out to the doctor before the first visit, by either mailing, emailing, or discussing it with them over the phone. Let them know the exact genetic diagnosis if you have that information, symptoms, concerns, and specifically how ichthyosis is affecting your lifestyle. Writing it down may also take some of the emotion out of the story, so you can remain focused, and also help the doctor to better prepare for the visit.
• Bring all blood test results, physician reports, photographs, etc. – anything that has been medically recorded.
• Always remember there is a difference in what you read on the internet, and what the average experience might be. Many times the internet is filled with “worst case scenario” stories. At your visit, discuss the things that scare you with your doctor. He or she will be able to discern medical fact from hype and sensationalism, and provide more supportive stories, people and resources.

Don’t hold back on discussing anything that comes to mind, particularly issues that have made you uncomfortable. This visit is an opportunity to educate yourself and to give yourself peace of mind.

Conference Update: When it comes to Ichthyosis, Do Women Have Different Concerns than Men? Yes.

2014 Conference Logo-WEBAt this year’s National Family Conference in Indiana, Bethanee Schlosser, MD, PhD will  lead a new breakout session, “Unique Considerations for Women with Ichthyosis.” During this session, Dr. Schlosser will identify and address the unmet needs of women with ichthyosis as it relates to their overall skin health, sexual functioning, and quality of life.  This is a unique learning opportunity for women, including a rare chance for women to voice personal experiences and concerns, in a safe and comfortable environment, and to ask those “taboo questions” often left unspoken. The session will include:

  • Effect of ichthyosis on specific functions (breast sensation, lactation, sexual function, etc.) as well as quality of life.
  • Women’s skin health as it relates to vulvar mucosal dermatology.
  • Patient-to-patient resources; group discussion; Q & A …and more!

This is a session for female attendees in any stage life. And, for those of you who may not be able to attend the conference, as with many of the conference breakout sessions, we will provide a recap article, featuring highlights from the session, in our online post-conference summary.

About our Worshope Leader:

Bethanee Schlosser is a Dermatologist and Assistant Professor at Northwestern Medical Faculty Foundation.

Dermatologist Discusses Integrative Approaches to Skin Care, at the National Family Conference.

 

Some of the most popular “eastern” wellness practices have made a permanent impression on the western physical fitness scene, including the practices of Meditation, Yoga, and a nutrient-dense, Plant-Based Diet.

shutterstock_137890049Meditation has been associated with increased focus, and tension relief, while Yoga is widely recognized as a practice for building muscle, increased joint flexibility, and a way to relax the overactive mind.  (Read how one FIRST member, uses Yoga to improve core strength and flexibility, reduce body aches and pains, and lower mental stress).  An exciting, energized and in-depth look at the benefits of these “integrative medicine” practices will be presented at the National Family Conference during the breakout session: Stressed Out? Natural approach for wellness, balance, and healthy living.  This session will be led by Vindhya Lakshmi, Dermatology Resident at Indiana University. Vindhya will discuss how making a few small lifestyle choices, can produce BIG results. Her session will include:

  • Intro to Yoga: How yoga can help reenergize and strengthen your mind, body and spirit
  • Meditation 101: Learn quick and easy breathing techniques to re-center and recharge
  • Fruits, Veggies, and Smoothies OH MY -Yes you can make healthy changes today! 
  • How to Break the Routine and create healthy, long-lasting habits.

 About Our Workshop Leader:
Vindhya is a driven, energetic & proactive Dermatology Resident at Indiana University with a strong and continually expanding passion for overall integrative & holistic wellness. Her future practice will focus around integrative approaches to improve skin care, utilizing both eastern and western techniques. She also advocates a plant-based lifestyle, and is dedicated to empower others to live more fulfilling, proactive lives.

 

 

 

“Our Caterpillar Would One Day Be a Butterfly”

We often hear stories from young families who are given the diagnosis of ichthyosis, soon after the birth of their child. Many families are surprised, confused, and often scared. This week we received a story from the Taylor family, sharing not only how they coped with the initial news that their baby Brooklyn, now three months old, was born with lamellar ichthyosis, but how they are finding their strength in Brooklyn herself.
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Brooklyn Taylor was born as a collodion baby in October of 2013 at Fauquier Hospital in IMG_20131107_195144Warrenton, Virginia. We had no knowledge of this beforehand and our oldest child had no signs of ichthyosis, so seeing Brooklyn like that was very scary for us. She was full-term and appeared very healthy, but when they took her from my arms I thought the worst and prepared myself to hear that she wasn’t going to make it. Hours after she was born they transferred her to a more equipped hospital.

She spent nine long days in the NICU ward at University of Virginia in Charlottesville. Doctors came and went and we were told the worst, but we knew that our little caterpillar one day would become a beautiful butterfly. Her skin appeared as if she had been burned and it was so tight that it pulled her mouth and eyes open until they were flipping outwards. We were afraid that she wouldn’t be able to eat on her own due to the complications of her closing her mouth, but Brooklyn didn’t give up. With help from a wonderful lactation specialist she latched on, but later we realized it was less stressful to just bottle feed.

A doctor suggested that we go ahead and do a skin graphic surgery on her eyes to help them close. We begged him to wait until the hard shell came off so we could see if maybe it would fix itself. Weeks after coming home, the membrane fell off and within days Brooklyn was closing her eyes on her own. We went to a follow-up appointment with the doctor and when he saw her he could not believe his eyes.

IMG_20131204_120251 Later that month we were told by her dermatologist that she had lamellar ichthyosis. We were overjoyed to finally have a name to put with the condition, but reading about lamellar was probably the hardest thing for us to do. Of course the pictures and information were very helpful, but they didn’t give us any hope. Later we saw that the hope we were looking for was right there in Brooklyn. From day one, she has showed us to never give up and that she doesn’t need to be healed, but accepted for who she is and how she is – beautiful inside and out.

Three months have passed and we are still learning about her condition and finding out what works for us. Bath time may be long and straining, but Brooklyn seems to enjoy it and she sure does remind us when its time for it. She is a very happy and demanding baby and every day is a challenge, but she loves having all the attention. Other than that, she is a normal child to us and should be treated as one by others. We are so proud of our beautiful little girl and because of her everyone can see what real beauty looks like.


Different is Beautiful.

It was truly amazing to see the response from our members and followers to the TinySuperheroes T-shirt promotion, created in honor of their one year anniversary, and also in honor of their very first cape recipient, FIRST member Brenna Westlake.

“In just five days 75 t-shirts have been ordered! In my mind, a total of 100 for the month was the original estimate,” said an excited Robyn Rosenberger, founder of TinySuperheroes. “Luckily the t-shirts are print-on-demand, so bring it on!”

If you are a fan of our Facebook page, you’ve already seen the uplifting phrase splashed across the front of the shirt, “Be Super in the Skin You’re In, Different is Beautiful.” It is as simple as it is powerful, and is striking the most resounding chord with our audience.

In fact, it seems this message has satisfied a craving; a desire for the opportunity to project one’s own voFB6ice, speak one’s mind, and be a part of something that is inspiring such a profound change in perception. It got us thinking how important it is for people to feel like they are not helpless; that they themselves possess the deepest potential for transformation.

And although it has only been a few days, we have already witnessed the transformation ourselves. As these individual voices of courage join forces, together, they are becoming as strong as the most powerful of choirs. Different is Beautiful.

Purchase t-shirt here:
TinySuperheroes


You are not Alone.

It is the season of reflection; a time to pause and embrace all of the lessons, gifts, and opportunities the past year has brought into our lives, and into the lives of those around us.

And it never ceases to amaze us here at the FIRST office, how many lives are affected, changed, or have even been transformed, when affected members find solace in the experience of another affected member. Perhaps it’s just the simple knowing that someone out there is listening, and at a very deep level, truly understands your situation.

Social media is making that possible every single day.  Members are seeing the value in engaging in daily conversation with those who walk in the very same shoes. In fact, without these online social groups, many people have never had the opportunity to connect with anyone else that has ichthyosis.

Sometimes the discussion focuses on a unique issue, like starting a new relationship, or dealing with the social difficulties brought on by skin shedding, or alopecia  – or maybe its a topic that most feel uncomfortable discussing, like how to inform co-workers of your skin condition, or meeting  a roomate for the very first time. (A FIRST staff member oversees conversations in each group, and if there are questions or concerns that arise that require our input, we are more than glad to join the discussion.)  Other times, social media groups offer a simple way to check in and say “Hello, I’m here and glad you are too,” or to post a photo of something spectacular; a simple connection that warms the often icy feelings of struggling with ichthyosis all alone.

At this time of Thanksgiving, we are grateful that so many people have discovered the many valuable resources available at FIRST. It is very validating to our staff, board, and volunteers, and continues to assure us that we are involved in a mission that is making a real difference in the lives of others.

But there’s something more.

We’re so delighted that so many of you are bravely answering the call to not only educate and inform yourselves as much as possible, but to share your experiences, your thoughts, and your personal stories of living with ichthyosis, with those who have reached out and expressed the need for connection. Please accept our bottomless thank you for reaching back.

If you haven’t done so already, we encourage you to find a FIRST Facebook group that speaks to your particular stage in life.  FIRST Facebook groups include: Adults with IchthyosisYoung Adults with Ichthyosis (18-30), Parents of Children with Ichthyosis, or Teens with Ichthyosis - and they are all currently accepting members. Additionally, we are excited to share the news that these groups have been engaging in spirited and supportive conversations daily, since the very first day they were created.

So join the conversation, meet some friends, and, hopefully, gain some much needed support, tips, and information along the way.

Have a safe and happy holiday!