CF awareness letter

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julie

New member
<i>An array of health problems stem from CF and those problems are exacerbated in situations such as second hand smoke. For someone living with CF, second hand smoke discourages their right to live a long and healthy life. It is much more than just an inconvenience, it can shorten their lives. Coughing attacks are a frequent result of mucus in the lun.......</i>

I need a little help with the above sentence. I want to elaborate on some of the "elective" things that healthy individuals do in public places that adversely effect those with CF. Smoking is one topic that many people mentioned so I would like to incorporate it. I am looking for some assistance to finish this paragraph though, I am having mental block.

Some things I can't figure out on my own right now are
What specificially is it that causes coughing attacks?
What is it about smoke that provokes a coughing attack?
Being that I don't have CF, so I don't know personally.....what else happens to a CFers body when exposed to smoke (bars, clubs...)


Additionally, I would like to ask for permission to use NAMES and EMAIL ADDRESSES (to attach as a separate page for any channel interested in doing a story, so that they can contact those who are interested in being interviewed personally) of the below people. If I am forgetting anyone who would like to contribute, who is willing to be interviewed if someone (by some miracle) is interested in doing a spot on CF, PLEASE PLEASE PLEASE SPEAK UP AND SAY SOMETHING, or email me at division902@hotmail.com!!!!!!!!!!

I may have some of the below email addresses and full names, but just to make life easier, if you are interested (even if not named below) can you please EMAIL me at division902@hotmail.com with your email address and full name (and if you want to include a phone # for contact or mailing address). Keep in mind that any information to attach to this letter will later be posted on this website and dessiminated by email so others can mail their stories in as well (or they can use the letter I am creating from ideas on this site, add their own twist, leave it the same....whatever they like) so it might be wise to create an alias email address for this purpose??? Last initials instead of whole last names will work as well.

Emily and Barbara
Melissa (Jazzy's mom)
Senatorgrahm
Kiwilady
Emerald Mirror
Starfall99
letsrockcfem
annonymous poster but posted the email address Loleta22@aol.com
Annonymous poster-Margaret Double Lunt Tx 11.11.04
Lynsey and chuck
Rose4cale
haylz

If I am leaving anyone out, I am very very sorry. PLEASE EMAIL ME or post on this site if you would like to have your name put on a list for an interview.

Thanks to everyone for all the ideas, suggestions, and support for this. I hope to have the letter posted on the site by next weekend!

Julie
 
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julie

New member
HERE'S WHAT I HAVE SO FAR, PLEASE PLEASE...MORE IDEAS???

To Whom It May Concern:

Cystic Fibrosis is the most lethal genetic disorder in America, affecting over 30,000 people. Yet the awareness of the disease is still so limited and usually concerns only those intimately involved in the life of a child or adult living with CF. It is my hope that this will change in the very near future. I am writing to you today to request your TV station air a show on adults living with Cystic Fibrosis. I have outlined below the many concerns of adults living with CF. Please help us raise awareness for this disease, so we can give longer, healthier lives to those currently living with Cystic Fibrosis in addition to preventing more births of CF babies by proper family planning screening tests and pre-pregnancy carrier testing on both parents.

Cystic Fibrosis use to be a childhood disease, with 80 percent of its victims dying before their 1st birthday circa the 1930?s. Now that people with CF are living well into their 20?s and 30?s a major treatment problem has presented itself. These adults no longer fit into a pediatric clinic, but there is a very limited medical support and treatment system for adults living with CF. Where do we fit in? This is a major concern of many CF persons that I have been in contact with. There do exist adult CF clinics and they are very sparse throughout the United States. Yet even most of those adult clinics don?t have the support system that is provided in a pediatric clinic. Most pediatric CF clinics staff full time CF doctors, nurses, Pulmonary function labs and staff, a CF dietician and a social worker all inside one clinic and a typical CF visit consists of 2-4 hours of theses staff members coming to you inside one single clinic. In an adult CF clinic most times there is only the benefit of a CF doctor and occasionally a nurse. If an adult wants to see a dietician, social worker or a Plumonary function tech. they must get a referral from their primary physician or the CF doctor, and schedule for a separate time. This is a huge problem for adults with CF who are trying to work full or part time jobs, do their medications and treatments everyday and still find time to schedule 4 or 5 separate appointments all to care for one disease. In the last few years, a number of adults who were ?graduated? from the pediatric clinics years ago, have requested of their old clinics, that they be allowed to return for treatment, that an ?adult clinic? just isn?t cutting it for them. While this can be beneficial in the fact that they have the ability to see every person they need at one appointment, the concerns and problems of adults with CF vary greatly from those of children. Adults with CF are faced with questions about intimacy, reproduction, marriage, working full time or part time, attending college. Most of the staff in the pediatric CF clinics have been trained in the concerns of children and young adults, and don?t know how to answer or deal with the many problems presented to them by adults. We must find a happy medium here.

Medical coverage, medications, invasive treatments and hospitalizations are only one part of CF. Quality of life is also important to many who face each day. There are many adults living with CF who are interested in advanced education, not only do they want to get their Bachelors degree, but many are interested in a Masters Degree or a PhD. There are also those with CF who want to be employed and in spite of their medical diagnosis and enjoy working full time. Those with CF wan and need to contribute just like everyone else; they just need support and encouragement.

An array of health problems stem from CF and those problems are exacerbated in situations such as second hand smoke. For someone living with CF, second hand smoke discourages their right to live a long and healthy life. It is much more than just an inconvenience, it can shorten their lives. Coughing attacks are a frequent result of mucus in the lun?????????


A mother who lost her daughter last year reminisces about her daughter?s constant battles with insurance and other necessary benefits. Her daughter had a lawyer willing to take her case for a transplant. She was on the STAR program but the STAR program would not pay for a transplant. So in order to have a transplant, her daughter would have had to go back on her Medicare for the transplant to be covered. But in doing that, she would have lost coverage of some of her necessary CF medications. Before her daughter turned 21, she was on her parents insurance but once she turned 21, the insurance company dropped her. She also remembers that when her daughter turned 18 Medicaid and her SSI were going to be dropped because they said her medications sustained her enough that she could find and live off of a part time job. Her mother can?t believe such an ignorant recommendation would have been given, especially when Medicaid knows the costs of TOBI and PULMOZYME (basic CF medications) easily cost up to $2500 each every month! They fought and won, but it wasn?t easy. Her mother stated, ?SOMETIMES I THINK IF SHE WOULD NOT HAVE HAD TO FIGHT EVERYTHING, MAYBE HER LIFE WOULD HAVE BEEN LONGER?.

So many diseases exist and each has its awareness of fundraiser. In many states, it seems that every single walk, except for the CF walk gets time on news broadcasts, TV, the internet and the radio. I am bound and determined that this change from here on out. Many people don?t know about Cystic Fibrosis until it is too late and a member of their family or even their own child has been diagnosed. Often times, there is absolutely no family history or reason for someone to believe that their child has even the slightest chance of being born with CF. That is the misconception that continues to bring CF babies into this world. With awareness and accurate information dissemination, this is something that can be eliminated!
 
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JazzysMom

New member
I think you have done a great job. The only thing that I suggest is to state how many people are carriers.....you know 1 out of 25. It needs to be made obvious that anyone walking around could be a carrier. If it seems like we are an "unusual" group or it cant happen to anyone then we might not get the attention that we need.
 
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anonymous

New member
Do any states have programs for CFs that are adults such as a Crippled Children type assistance program? I know with me, when I turned 18, I was dropped from our state's program and that's the time I needed the assistance most, when I was trying to make it out on my own.
I don't know how many states, if any have assistance in place for working CF adults (that make too much to get Medicaid) to provide a little assistance with meds, medical expenses, etc. but it would be nice if all states offered some type of assistance to adults w/CF.
This issue is certainly something that adults w/CF have to deal with and may be worth a mention.
It's entirely up to you. I know you don't want to write so much that they won't even read it.
 
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senatorgraham

New member
Great Job, Julie!!!!

My only suggestions are:

"Cystic Fibrosis is the most lethal genetic disorder in America, affecting over 30,000 people. "

In the grand scheme of things 30,000 people is not alot (This is not intended to offend anyone)....may be better to just say affecting thousands of people or tens of thousands of people. If we want a station interested we must keep in mind they have ratings to think about.



"So many diseases exist and each has its awareness of fundraiser."

Maybe .......So many diseases exist and each gains awarness through their fundraisers.

Again, great job Julie!!!

If you need me you can contact me (Steven J.Graham) directly at senatorgraham@yahoo.com

Sincerely,

"Senatorgraham"

"My friends are my estate. Forgive me the avarice of hoarding them."-Emily Dickinson
 
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ccflewallen

New member
I was not aware that most CF adult clinics only consisted of a doctor and a nurse. I have only been to one adult clinic which is at Vanderbilt. It is pretty comprehensive, having all of the benefits you listed for a pediatric clinic. I cant remember, but when I lived in or near Atlanta, it seems like kids and adults went to the same clinic at Emory University. Again these are probably two of the best medical schools in america, so most places may not be this way.

ccflewallen
 
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julie

New member
Great suggestions everyone, I will be incorporating them. CFwallen, there are a few adult clinics (I want to say probably 5-10) that DO have all the same staff as a pedi clinic, but 5-10 isn't enough-I guess that's my point. Anybody see a way I could better phrase it???

I'll make some changes, wait for some more feedback, input... and then post it again. When it is "complete", I will post it here and if anyone wants to copy it and sign their name to it and send it, or copy it, make a few changes and then sign/send it off or if someone want to change it all together, please feel free to do so. I am hoping to get about 15-40 people from this site to take this letter and do one of the above. The more requests the shows get (from different people all over the US) the more likely it will happen.

Shortly I will be posting the addresses I have been given to send story suggestions to. I hope that we can have max participation from this site!!!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">


Thanks everyone
 
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shamrock

New member
Hi,
This is a little off the point but I'd thought I'd say it anyway. When you send the letter, it will obviously be a while before any of the networks/stations reply. If however you get all negative responses, you may wish to consider an independent/freelance company to make the programme and then they will sell it to the networks. Over here at the moment, I am going to be on one such programme.You will usually see the names of freelance companies at the end of documentries and such.
I realise you are not at this stage yet but it just something to keep in mind. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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Beth

New member
It is a very well written letter and I agree that there should be a better awareness of the disease. I do not agree however with preventing the birth of CF babys. I think I understand what you mean by it but if me and my boyfriend are both carriers and found out we were haveing a CF baby I could never get rid of it. I guess I could never look at my sister w/cf and tell her that I terminated the pregnancy because the baby would be like her. I think that all new borns should be tested at birth, which is not done in my state of ND, so that an agressive aproach can be taken to inhance the life of the child. I understand that not all people are financally and emotionally ready to take care of a CF patient and that is your choice. I can't think of a way to word it better but maybe someone else has some ideas. Like I said, I think I understand what you mean but when you bring into acount that 1 of every 25 people is a carrier that severly limits who can have children I'm having a really hard time putting my thoughts into words right now. Do you see what I am saying?


Beth
 
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1princess

New member
I think what Julie probably meant to say was do the CF blood test before you conceive - that way you know if you are a carrier or not - then you can make the decision yourself on whether or not to get pregnant and take the chance.

We didn't know with our first child that we were carriers and actually found out during this pregnancy that we were carriers, but now that we know - my husband and I have made the decision to not have any more kids. However, even if I had known I was a carrier - I probably would have still gone for a second child - who knows though. Guess it depends on how badly you want a child.

Great article, Julie!
 
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anonymous

New member
Julie-
I think what you have so far is great! I have been trying to put something together on the lung transplant decision in a CF persons life. I don't know what direction I want to go in and was wondering if you had any ideas. I want to get across that almost all CF adults will face this decision. Let me know if you or if anyone for that matter has any ideas!
Thanks
Margaret
Double lung tx 11.11.04
 
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