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#19888 - 08/14/02 06:27 PM How can I be a supportive adult sister?
Sister2Brother Offline
Member

Registered: 08/14/02
Posts: 6
I need your help. As children, we never learned much about the Icthyosis that my brother has. Now that we are all adults, I would like to know how I can provide emotional support and awareness of his daily struggles? How can I encourage him, and be there for him? I regret not being educated on the subject while young and I hunger for this now, so that I can be a sister that understands and helps. Please send your ideas and resource ideas. (Books about the topic, etc.)

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#19889 - 08/14/02 08:12 PM Re: How can I be a supportive adult sister?
Chandra Offline
Member

Registered: 11/20/00
Posts: 707
Loc: Grants Pass, OR
Well, I'm 30 and I have Lamellar Ichthyosis, an older sister (32) a younger brother (21) and a younger sister (16).

Unfortunately, I have no books to suggest but I have suggestions and examples!

Just in posting that question, I suspect you're already a supportive sister. What my sibling do for me is that they listen when I talk, they give me honest opinions when I ask for them. They tell me they love me and give me lots of hugs. That pretty much works for me. And hopefully they're doing the same things for you.

Perhaps more of what you're looking for is how to respond when he talks about his skin. I would recommend listening first, then asking questions on anything you don't understand. A real perk for me is that my mother-in-law sends me the skin care products I like every once in a while so I don't have to spend so much money on them all the time. She and my stepmom and my older sister always keep a small supply for me at their houses when I come visit. That's really nice for me as I don't have to drag all my moisturizers around when I travel to see them.

Ask him if there are any clothes that are particularly comfortable for him to wear when his skin hurts, and that's the type of thing you might consider giving him for birthdays or holidays or something.

If he's nervous about going to the dermatologist, or isn't sure he should go, offer to go with him for moral support.

Lastly, ask him if there's ever anything you can help him with, especially in regards to day to day life with his skin. He may have some ideas that I don't or would like things that I am totally unaware of. After all, men and women do tend to want varying things [img]http://www.ichthyosis.com/ubb/smile.gif[/img]

Oh, one last place to check! F.I.R.S.T.'s site www.scalyskin.org can give you a lot more details about what type of ichthyosis your brother has and what some of the care issues are. Point out this web site to him, as well as F.I.R.S.T.'s site. Also, one thing that may be great for him if he has any interest in meeting others with ichthyosis is for him to join the support network on F.I.R.S.T. and consider going to the next conference that will be in 2004. Families are always encouraged to attend the conference and it's a very enjoyable experience for all.

Good luck and stay in touch! We're here for both your brother and you.
_________________________
I am female, and was born in 1972 with Lamellar Ichthyosis.

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#19890 - 08/14/02 09:17 PM Re: How can I be a supportive adult sister?
Sister2Brother Offline
Member

Registered: 08/14/02
Posts: 6
Chandra,
You are wonderful! Thank you so much for sharing this information with me. That helped me tremendously. I would never have considered the things you suggested! We've never really talked about it, and it means a lot that you responded with suggestions. I will get right on it!

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#19891 - 08/15/02 01:08 AM Re: How can I be a supportive adult sister?
Anonymous
Unregistered


Sister,
What kind of ichthyosis does your brother have? How old is he now, and how old are you? I can't say much more the Chandra has said already. The one thing she really hit on that means alot is to ask questions when you don't understand. It means you really care and want to help or at least educate yourself on your brothers condition. I have 3 older sisters who protected me and stuck up for me like a pack of vicious dogs. My middle sister was especially protective of me, to the point of embarrassment sometimes. To this day she is closer to me then any of my other sisters. Coming from someone who has ichthyosis I can tell you that it is never too late to be supportive of your brother. Write us back and fill us in on some details about you guys, where are you from? Ages? Ichthyosis type? Last but not least, do we know your brother already? If not, does he know about this site? F.I.R.S.T.? If he doesn't know about this site I highly recommend it, if you read through some of the posts you will come upon many stories of how other ichthyosis people have found this site and found that they are not the only people who have had to go through problems they thought were exclusive to themselves. I could go on forever about this board but I'm sure we would rather hear more from you and your brother. Write back soon.
Keith.

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#19892 - 08/15/02 12:58 PM Re: How can I be a supportive adult sister?
Sister2Brother Offline
Member

Registered: 08/14/02
Posts: 6
Keith,
You have given me questions to ask my brother. We are 26/25, he being a year younger. We live in different states and I will ask him what type of icthyosis he has. I actually don't know. I remember that our family went once to a FIRST conference in Manhattan years and years ago. (We were very young). Thank you for giving me questions to ask! I will tell him about this site, which has helped me tremendously.
Sister

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#19893 - 11/19/06 06:32 AM Re: How can I be a supportive adult sister?
josiah26 Offline
Junior Member

Registered: 11/17/06
Posts: 2
Loc: New Albany, Indiana USA
Hello. I am 26 years old and have Lamellar icthyosis. I think that the most important thing is for you not to treat him any differnent than you would if he did not have a skin disorder at all. I am not sure what types of medication your brother is on but I have found that accutane has done wonders for me. I started to sweat for the first time two years ago when I first started taking the medication. I also use the perscribed lotion. I have before and after pictures to prove my case. I think that it is really great that you are wanting to encourage your brother.
I find that when I get down about it it helps to think about all the great things in my life. Like the fact that I can hear and play music, or the fact that I can walk around with out a wheel chair. I think that on a scale of one to ten, having this skin disorder maybe registers a one. Ten being the worst. I saw a tv show with a little kid that had no arms and no legs and he had to write with his mouth. If he wanted to get around his class room he had to role around. That kid was just happy to be alive. He did not complain once. I think that inspired me more than anything. I hope this helps out.

------------------
Josiah P. Wilson
_________________________
Josiah P. Wilson

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#19894 - 01/31/07 04:12 AM Re: How can I be a supportive adult sister?
friskz Offline
Member

Registered: 01/28/07
Posts: 22
Loc: wuhan china
Quote:
Originally posted by josiah26:
Hello. I am 26 years old and have Lamellar icthyosis. I think that the most important thing is for you not to treat him any differnent than you would if he did not have a skin disorder at all. I am not sure what types of medication your brother is on but I have found that accutane has done wonders for me. I started to sweat for the first time two years ago when I first started taking the medication. I also use the perscribed lotion. I have before and after pictures to prove my case. I think that it is really great that you are wanting to encourage your brother.
I find that when I get down about it it helps to think about all the great things in my life. Like the fact that I can hear and play music, or the fact that I can walk around with out a wheel chair. I think that on a scale of one to ten, having this skin disorder maybe registers a one. Ten being the worst. I saw a tv show with a little kid that had no arms and no legs and he had to write with his mouth. If he wanted to get around his class room he had to role around. That kid was just happy to be alive. He did not complain once. I think that inspired me more than anything. I hope this helps out.



i am in full agreement your words,
_________________________
do i like,to be i want to be

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#26722 - 08/02/10 08:50 PM Re: How can I be a supportive adult sister? [Re: friskz]
mar23 Offline
New member

Registered: 08/02/10
Posts: 1
я воспитываю брошенного ребёнка с ихтиозом. Родители отказались от него при рождении. И ему будет тяжело жить одному после 18 лет. Сейчас ему 12 лет. Live in Belarus.

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