Tuesday, 27 March 2012

In Envy of Cancer.

In Envy of Cancer

A telemarketer for a worthy charity called me today. They wanted me to know about the amazing raffle they currently had available to raise money for kids with cancer. They listed off a litany of prizes which included homes, vehicles, trips … very impressive. They only wanted $20 for 5 tickets - not much considering what you could win but then they clearly anticipated the thousands of people who would contribute. The telemarketer then went on to tell me about the ongoing research they had been doing for years and how they were close to a huge break through. It was exciting stuff.

I declined to participate. As I explained before … when I am asked about donating to any of the big causes, the answer is "no." It is "no" even though my life has been personally devastated by cancer and a few of the other worthwhile causes. It is "no" because within our family is a rare blood disorder that is horrific in its rampage and there are no big campaigns for, nor research dollars being sent to find even a treatment, let alone a cure.

After I hung up I felt incredibly angry, then sad ... and I spent the morning crying.





There are big differences here among charities. Cancer is a known, "respected" disease. It gets a lot of time at centre stage. People who suffer with rare illnesses face problems that go way beyond the lack of monies for research.

1. When someone announces that they have cancer, people respond immediately to the seriousness and offer compassion. When people with rare diseases state what they have, most people turn away without much of a response. They seldom take the time to ask any further questions or to understand that some of these illnesses can make cancer look like a brief cake walk.

2. When someone has cancer people are aware of what is going to happen and what help and support a person needs. They frequently offer to help. People with rare diseases are an unknown so even if someone wanted to help, they have no idea what to help with.  The person with the illness probably has no idea what they are going to need help with.

3. When someone with cancer ends up at the hospital, people spring into action with care and compassion. No-one questions that statement …. "I have cancer." No-one calls into question your sanity or your personal integrity. When people with rare diseases show up, there is often little chance  the doctors will know much about the illness or what they are supposed to do. People with rare illnesses almost always have both their sanity and personal integrity questioned and often leave the hospital without treatment and in tears from the lectures given them and the treatment received from medical staff.

4. When someone with cancer asks for pain meds, we give them as much as they need and is allowed. Often when people with rare illnesses ask, they are accused of drug seeking and their pain is questioned as well as their ability to handle it. They often hear phrases like "not even cancer patients need that much medication." This statement is probably true … true because the pain being suffered is much WORSE than what people suffer from cancer.

5. When someone with cancer is bedridden and then has a good day and manages to get out and be around people we applaud them and say things like "what spirit," "what courage!" When people with a rare illness manage to get out of bed and be around people we use that as evidence that they really are not THAT sick.

6. Cancer has a face that we all recognize. We know the weight loss, the hair loss, the dark circles under the eyes … it tells us this person is ill. If a person does not present in that way, we tend to disbelieve they are ill or in pain.  Some rare illnesses do not cause the body to waste away like that, and so people use the comparison to cancer patients to say things about rare illness patients like "they don't even look THAT sick."

7.  When someone with cancer states they are dying we help them to make their last days as comfortable as possible.  When someone with a rare illness states the same thing, we usually argue with them and refuse to believe them, making their last days incredibly lonely and painful.

8. Cancer patients can hope.  A cure may be just around the corner, treatments are improving all the time.  There are many alternatives.  People with rare illnesses are isolated and often without hope.  Support Groups are difficult to find.  Often there are not even any effective treatments and all they can do is try everything the doctor suggests, even though the doctor with have little to no experience with the illness.

9.  Huge campaigns are done yearly and constantly for every type of cancer imagineable. When people become ill we run for them … we swim, we cut our hair, we have tournaments, and sales, and parties and auctions. When people become sick with a rare illness, their lives often empty of any meaningful relationships and they are reduced to what the "state" will pay for in regards to medical treatment which will be even less than what any patient with cancer who is financially struggling faces - less because many treatments will not be covered at all as they are so unknown.

10. When people die with cancer or beat it we often characterize them as heroes. We often carry on in their name raising more money. We admire them. When people die with rare illnesses no-one notices. Worse, when many people live on - a lifetime of battling pain and limitations and judgements, we fail to ever recognize their courage.

So yes, I felt sorry for my family today and for the continuing nightmare of a rare blood disorder, Acute Intermittent Porphyria, and the lack of donated homes, cars, and trips to raise money for the years of ongoing research that is about to have a major breakthrough and make a huge difference in the lives of so many children who suffer with cancer. I felt bad because I have kids and grandkids, and while misery is not a competition sport … I sometimes wish that their suffering mattered as much .

For more information See:  American Porphyria Foundation

You might also like to read other articles on Porphyria by Aria E. Appleford
Porphyria Rant.
Sometimes Hope Is Just Being Believed - Acute Intermittent Porphyria.
How Many Tears Will It Take To Change The Way Doctors Respond to Porphyria?

22 comments:

  1. You know what?

    You're right.

    I'd like to help. If it's okay with you, that is. You know I own Gothika. Gothika has a major event on June 15- Oopskate. We always donate the proceeds to charity.

    If it's all right with you, I'd like to offer this event to raise money and awareness for this rare disease.

    -Axi/Bronxelf

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  2. WOW Axi that would be so amazing. I am so humbly overwhelmed at your kindness I am kind of at a loss for words. Any money, any help, any attention would be awesome. Acute Intermittent Porphyria impacts much differently from the other porphyrias (there are 7 -depending which enzyme you lack) but one of the victims of the other types are the children who cannot go outside while the sun shines or their skin burns. Every country has a Porphyria foundation that is struggling - Canada for example desperately needs a doctor to sign off on a list of drugs that are dangerous for Porphyria (there are hundreds and it has to be updated constantly) You can imagine that no doctor wants to attach his name to that one. The US Foundation has done some serious work and most of the other countries use their information and refer to them. Please let me know what else you need from me.

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  3. As soon as I get World Goth Month stuff squared away we can plan this. I am happy to help in any way I/we at Gothika can. It may not raise a fortune, but it will help a little bit. We can make it purple themed.


    What we generally do is have the people who work at Gothika who also have stores, make an exclusive item just for the night, and all proceeds go to the charity, and we donate all our tips.

    As a bonus, Dare is Canadian. Im sure he would be interested in this. :)

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  4. It would be awesome to have the money go to the Canadian Porphyria Foundation ... my husband died in Canada and my daughter is ill there.

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  5. Done. Let me speak to Dare when he wakes up. We'll make it happen. We're up to our eyeballs in World Goth Month prep, but once we're past May 22 (World Goth Day) It will settle down and we can plan this.

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  6. Thank you ... I really am overwhelmed with your kindness :).

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  7. Aria

    Once you and Axi have sorted out what you are doing, let me know and I'll publicize it on my blog (linking back to your articles perhaps? Or maybe a guest post from you?) and on my Twitter feed as well.

    Alex

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  8. Axi my name is Brianna Hughson. I am Aria's youngest daughter. I started crying after I read your comment. If I could help in anyway from Canada to Raise money for Acute Intermittent Porphyria just ask. Living with this has been a huge struggle for me. I am so thankful for my mother and all she has done for this illness and all she has done for me and my children. God bless. Huggles

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  9. I am just ... you guys have no idea how much your kindness means. You really do not. When my husband was sick for the three years before he died we had good friends who told people he was faking it. He was so concerned about people's feelings and them not understanding what was happening, he wanted to talk about it. So he did. It was hell. We were abandoned by family, friends and our church community. My kids were all 11 - 16. I learned to not ever expect people's help or kindness and to have you respond in this way is just really overwhelming and I thank you from the bottom of my heart.

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  10. I´ve know Axi for quite sometime and she is an amazing organized person, count me and my little blog to lend a hand and publicize and spread the word :D I´m sure something good can come out of all this.

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  11. Just an update-

    I did speak to Dare, and he thinks it is very appropriate that a goth club help to fight a blood disease (vampires, and all.) Lokii LOVED the idea, especially as she is all about purple things(and she hosts that event for me). Rydia jumped in behind it also. I am quite certain everyone who works the event will be happy to help out however they can. Gothika has good people, and they have never once said no to a charity event.

    We are confirmed. We will donate all proceeds of the event to the Canadian Porphyria Foundation. The event is on June 15- a Friday night. It will be either at 8 or 10pm SLT (need to talk to staff about which is better or easier for them, either one is okay for me.)

    Again, the moment we have World Goth Month stuff in hand (post May 22) we can work on this in earnest, though I expect we shall have posters and need info from you before then to do early publicity.

    We are happy to help in any small way we can. We're not a big club, but we have good people there, and if this is how we can help you and your family, this is what we'll do.

    Anyone who wants to find me inworld can do so under Axi Kurmin.

    Brianna-

    We're happy to help you and your family out in any small way we can. Whatever you folks think is best to do? That's what we'll do. :)


    Aria- you're a good, smart, wonderful person and I have been honored to know you in the small way that I have. Many hands make light work. We can do this.

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  12. "You must not lose faith in humanity. Humanity is an ocean; if a few drops of the ocean are dirty, the ocean does not become dirty." - Mahatma Gandhi

    Need I say more?

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  13. well ... just tried to contact the Canadian Porphyria Foundation and some of the people I used to work with only to find out that it has had to close down due to lack of funding. SO - the money would be best to go to the American Porphyria Foundation at this point I think. Will continue to find out what I can.

    The vampire connection is fascinating ...

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  14. they are trying to get enough money to re-open http://www.causes.com/causes/433145-canadian-association-for-porphyria-please-help-support-the-importance-to-reopen-the-doors

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  15. Would you like us to donate the money toward reopening it?

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  16. That is what I am trying to find out ... if that is even a possibility at this point. If I can track down Lois (the woman who ran the organization) I can find that out. Give me a couple of days to see what I can find out. :)

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  17. Wow!
    You all rock!
    I have EPP (Erythropoietic Protoporphyria (EPP) or Protoporphyria) and am a Volunteer for the American Porphyria Foundation. I am sitting here with tears in my eyes.
    I was very disheartened when I heard the Canadian Foundation was no longer functioning.
    If you all could help them reopen that would be great!
    I couldn't fathom what my life would have been like without the APF for the last 30 years supplying my Doctors with the proper info for my care and treatments.
    Remeber that that the APF is able to help and assist Porphyria patients all over the world.
    Until the Canadian Foundation is back up and functioning the APF is here to help.
    The American Porphyiria Foundation works with many other Porphryia Foundations including the Canadian Foundation in the past.
    Working togeather (just as you all are doing) we can and will make a difference in the quality of care and life to those of Us (present and future) that live with Porphyria!
    Thank You again every one!
    May God Bless you all and your efforts to help others.
    Live, Love, and Enjoy!
    Rob

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  18. Rob THANK You for your comment. YES as I mentioned the American Foundation has been a rock for many of the other organizations. I am not getting any response from any of the people I used to work with at the Canadian foundation - they seemed to have a spurt of activity about 2 years ago and then it has all gone quiet. I have not been able to get any response from the woman who started the facebook movement either. I will be just as happy to have the money support the American foundation if nothing can be done for the Canadian one.

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  19. Rob I know what you go through. I have all symptoms of AIP. My father died 16 yrs ago in a few days. I have tested boarder line for AIP twice and have had many false negatives. I did get somewhat treatment for about 4-5yrs of the 12yrs I have suffered. The only time in 12yrs I have had a somewhat normal life is when I received a hemeaton transfusing(sorry my spelling is bad.) The way the healthcare system treats me here in Calgary, Alberta, Canada is disgusting and I dont go to the hospital much anymore because of this. I hate how I am treated and most times end up crying on my way home. I know now what my father had to endure and how horrible my family feels when they have experienced how my father and I have gotten treated due to having Porphyria. I just wanna be able to live a normal life and not to be judge all the time. I am crying as I write this. About 6yrs ago they said "nope you dont have Porphyria Brianna". That's when the treatments stopped. Since then my symptoms have increased to be far worse then they were when I was being treated for AIP. I now have major gynecology issues on top of it. I want to be here for my children, my family and my close friends. I wanna make a difference in this world. I have no clue where to start. I dont know what will make things better for myself and others that suffer from this horrific illness. My family and myself have fought so much for this AIP that I dont know if there is anything else we can do. Anyone that has read or seen Porphyria knows it is so brutal to watch what effect it does to a human body especially if you love that soul in the human body. I am sick of being in this pain all the time. Not being believed. I have silenced myself alot probably because of the way I have been treated in my whole life not just from this Porphyria. I have no faith in this healthcare. I suffer alot but hardly ever show or speak of it anymore. I just do what I have to with a pretty smile on my face. "Yup everything is FINE". I dont want to live this way. I hope that if it is not me who can get help for AIP, that it will be someone else that has struggled like I have from Porphyria. Yes something needs to be done for Porphyria but what?. Again if I can help out just ask. God bless. Brianna Hughson

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  20. My dear Aria, How much I love you today for having the guts to tell it like it is! I use the same cancer analogy when speaking about those with mental illness. Mental illness is not a 'compassionate disease' that grabs people's heartstrings. It's something they shun and there is a great deal of stigma around. Let's hammer the truth home together girl!!!

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  21. Yes you are so right. Mental Illness is another one of those issues where people just seem to leave their common sense in the toilet. On one hand you have people who shun them and then you have others who think if you just love them enough, or feed them the right food, they will get better and be fine. I am glad you brought that up here because I should have included that - it is another area where people are shuffled around and abused instead of helped.

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  22. For anyone referring here still, here's the information about Oopskate 2012. All proceeds will go to the American Porphyria Foundation, as promised.

    http://wp.me/p14Itl-hr

    Hope to see you there!

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