Starting an Eczema Support Group

In honor of eczema awareness month, please welcome our guest, Mei, as she shares her experiences with starting her own eczema support group!

Dealing with eczema is stressful (read more about that here), but you’re not alone. Everyone knows someone effected with eczema, sadly it’s too common these days. There are online blogs like this one, FB pages and groups, an endless supply of online resources for eczema!

But meeting someone person-to-person in a support group is priceless. We listen to one another, offer advice, provide a shoulder to lean on, offer ways to cope – I could go on. So, if you’re dealing with eczema yourself or helping someone else through it, please consider a support group. First check with the National Eczema Association (USA) or the Eczema Society of Canada to determine if there is already a support group available in your area. If there is, great! If not, read on to learn some valuable tips for setting up your own support group.

And please don’t forget, The Eczema Company is donating $1 from every sale during the month of October to National Eczema Association. So, if you’re not quite ready to start your own support group, know that you’re still supporting eczema awareness by making at purchase at The Eczema Company.

-Jennifer

How to Start an Eczema Support Group

By Mei Aka (see bio below) 

NSC Public Forum, With 200+ Turn Out!

Thanks Jennifer for having me share about this, a topic close to my heart.

A little about myself: My baby girl Marcie had eczema from two weeks old, and it was a struggle and as the months went by, it was clear to me that parents with eczema children have their unique set of challenges. When Marcie’s eczema got better at about a year old, I started my blog EczemaBlues but realized that nothing could replace the face to face support, a hug, a knowing smile from another parent who went through the same struggles.

My national support group (Singapore) started with the assistance of the National Skin Centre (NSC) – it was perfect timing, they wanted to start a support group and I was already supporting parents online through my blog for about a year. A committee was formed, with an adult patient, doctors, nurses and medical social workers of the NSC. A public inaugural event had a turnout of over 200, and subsequently, I facilitate small group sessions on a monthly basis. On starting a support group, I would humbly recommend the following:

Seek out Hospitals or Relevant Clinics

There is always a chance that hospitals or relevant clinics are looking to start a support group, but haven’t the resources or a motivated patient to spearhead such efforts. Even if there is already such a group, the likelihood of them requiring additional support is always there. If the motivation for starting a support group is to support others, it shouldn’t matter that much if you are the founder of the group. A group under a hospital or clinic, such as my group, usually has boundaries as to what products or remedies you can share. As a policy for my group – no one is allowed to sell anything and products are mentioned only with the approval of the doctor advisory panel.

Have a Sufficient Pool of Interested Participants

My personal experience is that if you hope for 10 people to turn up, you may need to have a mailing list of 50 people at least. Prior to becoming the co-chairperson of the eczema support group, I already had a mailing list of about 30-40 families interested in a support group, yet as we all know, severe eczema flare-ups could happen any time requiring some last minute cancellations. I’ve actually organized quite a few meetings for an online group, but turnout wasn’t good as parents may have last minute issues such as children having a flare-up or falling sick (fever can also trigger a flare-up). Therefore, if you can’t form a group under a hospital/clinic, it would be good to start collating a mailing list, supporting parents online, before actually organizing a face to face meeting.

The other possibility is advertising in your local community’s newsletter or posting it at your local libraries. If you’ve set aside money to start the group, you may want to budget in such advertising cost.

Being Clear about Your Audience and Purpose

Passion is required to sustain a support group – and being clear about your purpose and who you’d like to support helps. For instance, if you are looking at supporting the lower income, you will have to explore channels that reach out to them – maybe more offline channels. Also, the issues that a parent with an infant and one with a teen with eczema would be different – if you don’t have the resources to hold separate sessions, you may consider focusing on the group you can most identify with. Purpose is also of paramount importance – as mentioned before, if your intention is to promote your business, you wouldn’t expect endorsement from hospitals/clinic and therefore, may have to tap into independent dermatology clinics if you’d like to have doctors in your advisory panel. Also, be clear that you do own an eczema-related business so that parents who actually turn up in your meeting won’t leave feeling you didn’t disclose fully.

Keep it Going

Each sharing session should ideally have a topic in mind, so that discussions won’t be all over the place and participants in your mailing list can decide which sessions to attend based on their own interests. Also, ground rules for the group – for me, ‘Everyone gets to Talk’ and ‘No one sells Anything’ are always applicable every session. Obviously, if you are a business owner looking at promoting something during or after the group, you can’t apply double standard for others not to do so. Have notes relevant to the topic, and giveaways, or lucky draw if you can – everyone appreciates those! Also, refreshments at the end of the session help end the session on a light-hearted note.

I’m still learning how to run a support group and finding a topic can be more challenging than you think! But just get it started and keep it going, for me – one mom telling me she feels supported and glad she came will make my day! Keep me posted on your progress, either on Twitter, on my blog, GooglePlus Eczema Community or in the comments in this post. Take care!

Mei and Marcie

Bio: Mei Aka is also know as Marcie’s Mom. She blogs at  Eczema Blues and is inspired by baby Marcie, who has had eczema since 2 weeks old (considered very early). Marcie’s Mom quit her job and stayed home to take care of Marcie. Now, Marcie is 3 years old and her eczema is under control, though scratching (till bloody) is still something that the family has to deal with. You can find her on Twitter and Eczema Blues.