Affie Adagio – Page 21 – Dr Affie Adagio

E.B. (Epidermolysis Bullosa)

In Australia you can help by reaching the support people for E.B (Epidermolysis Bullosa) at DebRA Queensland. As a result of my post about Butterfly Day and E.B. there was a comment by Gena which I believe will help the E.B. campaign, so I’m including her comment in full here. Hopefully this will inspire people to become active in Gena’s work too. Children especially suffer such pain and life threatening illnesses because of Epidermolysis Bullosa so please consider pledging your help.

Comment by Gena:

Hello! I receive “google alerts” for anything about EB, and your blog arrived in my alert today. I just wanted to write and say “THANK YOU!” for spreading awareness about EB! My Mom suffered from Recessive Dystrophic EB, Hallopeau-Siemens subtype. She was a marvelous woman, and a warm and caring mother to me and my two siblings. She is one of the few with her severe subtype to have children, and we are all EB-free. She lived to the age of 65, and serves as an inspiration to others with EB because of her long life and courage in the face of this disease. She endured many infections from chronic wounds, had many surgeries to improve her mittened hands, developed squamous cell carcinoma which resulted in amputation of an arm and a leg, and yet she loved life and was in all ways a child of God. I wrote an article after her death for the DebRA organization, which you can view here: www.thedenslaws.com/personalstories.html

In the U.S., I am working with volunteers to pass a Bill for National EB Awareness Week, Bill H.RES.335. The companion Senate Bill, S.RES.180, has already passed. If one of your readers knows folks in the U.S., they can write, fax, email or phone the House Majority Leader, Speaker of the House, and Majority Whip, and ask them to bring this Bill to a vote under the 109th Congress, before they finish in December. They can ask the same of their own Congressperson, and they can get all contact information at www.house.gov or www.congress.gov.

I also work with DebRA International, helping people in countries to find resources. Currently, I’m working with a family of four siblings in their 20’s in Iraq who have no bandages or wound care treatment, to go to Israel to be diagnosed and receive instruction on bandaging, and a couple in Pakistan with a 2-year-old son – all have a more severe subtype of EB. There is just not enough help for these people, and spreading awareness as you have done is a great gift to our community!

Thanks for the opportunity to leave a comment! Gratefully, Gena Gruschovnik

Wedding presents

When two people get married, guests share the happy event by giving wedding presents. The size and expense depends on the giver’s budget and their closeness to the couple. Nowadays, in this country, the couple chooses a store where they set up a register and the guests can go and buy whatever items the couple want. The purchasing process is made easier that way and duplications are avoided.

as we discussed their wedding plans
the bride mentioned that they had
even chosen the store for the register
and it was one which had a variety of prices
so that the wedding presents could even
be bought for a reasonable price
this was especially good because their guests
varied in financial circumstances so that
some could afford expensive presents
and others could not
this was a smart choice

Spirituality means community

Some of us do not believe in organised religion but nevertheless are spiritual. Spirituality can mean many things. Participating in music, dance, art, meditation, giving service and/or belonging to a specific community are all ways of being spiritual. This is apart from belonging to an organised religion which can also be positive. Spirituality is important to our wellbeing and serenity, teaching us how to develop healthy relationships.

the small child was intelligent and personable
yet she was extremely shy at most times
as I watched her play on the abandoned playground
she was delighted with her activities, then
some more children arrived and she ran back to me
saying that she’d had enough but I knew better, so I
encouraged her to go back and play some more with
the other children who seemed friendly enough
at her age of 4 I knew this was important for her ability to
form relationships and be a part of the community
after the initial hesitation she joined them happily
her parents, teachers and church were doing likewise
and today at 12 she is popular, confident and healthy

Chocolate highs

Most of us have heard about surveys that showed when we eat chocolate we get the same high as being in love. That is why we love chocolate. Eating chocolate releases endorphins which make us feel contented and happy. That’s quite harmless as long as we don’t do it to excess (addiction) and as long as we stay aware of our true feelings which will only become troublesome if we do not acknowledge them.

at the age of 11 my father married again
I was happy to have a stepmother and step siblings
family was important in my worldview and since
my mother left us taking my brother with her
I missed having my brother close but I didn’t miss
my mother’s screaming and abusive behaviours
my stepmother was a nurse’s aide and she
taught me how to keep a spotless house and
cook and wash and iron all the family’s clothes
she said I would always appreciate this in life
I don’t think she would be happy to hear that
thanks to that hard work when I married I
used to hire people to do my ironing and vacuuming
anyway, the best thing I remember about her is
that on Sunday mornings we used to all get into
bed together just long enough to eat some chocolate
she taught us how to suck the chocolate to make it last
and to really enjoy the taste – delaying gratification
now and then that’s how I still eat chocolate but
I can do that because I’m not addicted to chocolate

Butterfly Day

Today I heard on the car radio that it is Butterfly Day for kids suffering from E.B. It was the first time I had heard of this disease and so I looked at their website here and in the United States [be prepared for disturbing pictures]. I was appalled at what small children go through with Epidermolysis Bullosa as their skin blisters horrendously and causes them infections and tremendous pain.This is a rare genetic disorder and affects all nationalities.

The wounds vary in severity and although they resemble burns, they don’t heal as burns do. The child with E.B. cannot ride a bike, skate, or participate in sports because normal play causes chronic sores which are sometimes covering 75 percent of the body and can be life threatening. These children are confined to a diet of only liquids or soft food to cope with blistering and scarring which occur in the mouth and esophagus.

Their fingers and toes can fuse due to scarring, leaving deformities affecting their ability to function. Their lives can involve being constantly admitted to hospitals for wound treatment, blood transfusions, biopsies and surgeries. They often have sight problems because their eyes blister. Chronic anemia is another symptom and this reduces energy and retards growth. Life beyond 30 years is not expected.

I found that in Australia there are attempts to raise money and support services for children who suffer with E.B. and for their families. So I hope that I can raise awareness about this devastating illness through my website to help their fundraising and make their plight easier.

I am sure that you too will find it as heartbreaking as I did when you visit the E.B. websites.

Lift our spirits

There are clouds that are dark and gloomy and there are clouds that are light and fluffy which lift our spirits to look at. That is exactly how we can see some of life’s experiences. Some are dark and gloomy but once we have sat and experienced the depth of the gloominess then we need to reframe the experience and make the best of it. Even the worst experience can have a better outcome – one door closes and another opens.

he was so gloomy because he lost his job
as we sat and assessed the pros and cons
of the situation and its implications
he seemed to be more relieved
because he wouldn’t have to put up with
the stress he had faced before and
he had felt unappreciated too
as he realised that this was in fact
going to work out better for him
his spirits were lifted and he
looked forward to what the
new day would bring

Addiction and anorexia

Much has been written about the effect that thin models and movie celebrities have on young women. In an effort to look like these role models young women develop eating disorders. Addiction and anorexia are the same condition. When a person suffers from anorexia it is on the same eating disorder continuum as compulsive overeating. Just as life threatening as other addictions anorexia results in a distorted perception. The afflicted person does not see themselves as being thin and continues to do without food in order to lose more weight.

she was such a loveable person and
so thoughtful too, not to mention how
talented she was in writing
poetry straight from the heart
however, she battled addiction and anorexia
she managed to become free of the heroin
but not of the need to avoid eating
no matter what she tried it worked only
for a short time and then she was back
to her old ways which eventually led her
to her heroin addiction and death from starvation
some more fortunate are rescued from this fate

Nothing is as it appears

The jaguar is popular and as people admire its beauty they forget how dangerous it can be. Nothing is as it appears. Within seconds it’s capable of ripping its prey apart, as many animals can do. To a certain degree the same can be said of the human animal. Usually humans try to present a persona which is attractive, lovable, and successful so that they can get what they want. Some though are dangerous because they can easily become violent, either emotionally or physically or both. Prevention is best – we need to go gently into a new relationship until we are sure of the other person’s temperament. We also need to be prepared to get out of the relationship fast if it proves inappropriate and not wait until it’s so dangerous that we can get hurt.

they came to see me and by the end of the session
it became apparent that he was not willing to change
even though he had violent tendencies
and she was not ready to leave him
when they came back to see me I made it clear
that I could not see them together any more
because it was as though I was holding her hand
while he continued to be violent with her
I recommended that she contact the Helpline
for this type of dangerous behaviour and
stressed that her life depended on
her taking urgent action, my words annoyed him
she came back months later and wanted
to undergo therapy on her own as
she had legally removed him from her life
she had a pattern of attracting similar types
and she wanted to stop, so we began the work
today she lives the life she’s always wanted

Pets at your wedding

Pets are part of the family in many cases. So at one of the most important ceremonies of your life it can be vital to have your pet present. When you have a civil marriage ceremony that is possible. You not only choose the type of ceremony you will have, the place it will take place but also having your pet with you as part of that special day with the people you love most.

they had been living together for several years
and now it was time to celebrate their union
with a wedding ceremony which included
family, close friends and their pet who
was like family to them
it was such a rich day because
they could have their celebration
exactly how they wanted and
in their favourite park
with their loved ones sharing it
especially with their loved pet

Marriage dog, photo by Michael Ruck, Bonn Germany

Feelings of Deprivation

Parents and teachers have the important role of setting limits for children. However, some people forget to be loving and are too strict in this role. This causes feelings of deprivation in children which influence them negatively all their lives. Deprivation is one of the basic symptoms of addiction. Addicted people try to feed the feelings of deprivation by rewarding themselves to excess. This leads to lack of self discipline and they are compelled to keep rewarding themselves to their own detriment. The solution is to find a method that resolves the deprivation experienced and creates feelings of love. This varies with the individual but it can be done successfully with or without therapy. Self help groups are a loving fellowship and play an important healing role in this process.

whenever I promised myself to eat healthy and avoid
what’s unhealthy for my diabetes and weight gain
all the good intentions kept failing!
overcome by the strongest feelings of deprivation
my resolve weakened which led to
eating something not on my food plan but
I remembered how I mastered my nicotine addiction with
18yrs of abstinence, freedom from chain smoking now
but that feeling of rewarding myself no matter how
short lived was connected to the amount of strictness
I experienced as a child and I was in touch with that so
when I gave in it was like rewarding the crying child inside
then I found a food plan for Carbohydrate Addicts and
my feelings of deprivation and cravings were resolved
what’s more I feel loved and normal while losing weight
my diabetes blood sugar count is lowering steadily

All you need is, photo by Sam LeVan, Philadelphia, United States, best therapy