Genzyme: A Drug Company That Cares

For years I have been living with a disease called Pompe. There is not a lot about the disease that most doctors know, let alone people. I always get the “What is that?” question. I try and find an easy way to explain it, but the truth is there is nothing easy about the disease.

Yesterday the folks at Genzyme had a little get together with those of us here in the area with Pompe. Everyone brought along a friend or a spouse. I brought my daughter Mariah. While I would have loved Travis to come he worked overnights until 6am yesterday morning and he needed the sleep. Bringing Mariah was wonderful though. She’s always a HUGE support for me and she helps me with so many things. She’s also old enough to understand. As the group talked and topics were discussed she listened. When we left she had questions and I was happy to answer them. I was so glad she took away the information she did. The biggest thing that struck her:

Why do the people with Pompe’s lose their friends?

This was actually easier for me to explain then maybe it would have been for someone else. I used the accident and my injuries from that as a guide. And I replied:

Well, you know how people get together with friends and do things.. Well if they have someone with a special requirement (ie I can’t walk far because of my ankle, but also my fatigue from the Pompe) they have to make sure that what they are doing will accommodate for that person (ie being handicap accessible). 

She understood completely and she was pretty appalled. She said she could never stop being friends with someone because of something like that. Of course she sees and deals with it first hand so her perception is probably different then other kids her age. This however will carry over in to her adult hood and she will be much wiser in her decisions at that time.

As I sat there yesterday listening to the story that Mark (a Pompe patient with a great attitude and outlook and kick butt wife who’s a nurse) told, I swore he was telling MY story. As I looked around the room, I seen everyone else doing the same thing.. nodding and feeling like it was their story. This disease is so hard to diagnose and unless you get the right doctor and the right test, you will be diagnosed with 500 other things before you find out what you really have is Pompe. It’s frustrating, but it’s the reality. While I would NEVER wish this on anyone, I am really glad to know I wasn’t alone and that my battle with getting a diagnosis. I really wish that doctor’s would take the complaints of patients more seriously. When I look back I truly probably should have been diagnosed 10 years prior to my actual diagnosis. The emotions that I felt as I sat there were completely unexplainable. The way my heart felt was unexplainable. For once I felt like when I walked into a room people “got” me. I didn’t have to explain what Pompe was. I didn’t feel judged for moving around and the weird altered way that I move. It felt good to be accepted and understood.

Now that I have a diagnosis I am trying very hard to learn all I can. I network with others, which really helps me when there are symptoms I am not sure about or I am struggling with the doctor, etc. I’m also getting bi-weekly infusions of Lumizyme. All of the others at the meeting are also getting the infusions of Lumizyme. Some of them longer then I have. Every single one of us was in a different area with different progression, but we also all had very similar symptoms. We all also varied in age. 

Genzyme is the company that makes Lumizyme. Lumizyme is a VERY expensive drug. Infusions are between $30K to $50K. Genzyme makes other drugs for other rare diseases also. I am sure they come with a similar price tag. Genzyme is a drug company. They have a drug that we are at their mercy for. They’ve got money. With all my medical hurdles, I’ve worked with countless drug companies. I’ve also worked with them when I was employed at the insurance company as well as at the Psychiatric Center. I have NEVER come across a drug company that was NICE let alone one that I would want to have to contact for anything.. until now. Genzyme is such a compassionate company. They are completely amazing! I’ve had nothing but a positive experience with them. There are 3 people that make up the team that I have the pleasure of working with. There is a Clinical Science Associate, Patient Education Liaison and Case Manager. Each of them is a piece of the puzzle. Each of them work flawlessly to get things done. They are compassionate. Each and every time I have contact with one of them I feel like I am talking to a friend and not a company that wants my money. I speak to them fairly often. It’s not a call I dread making.. ever. 

Genzyme is more then a drug company to me. They put this meet up together yesterday and it was so very sweet of them to get us all together and let us share our stories. They can use that information to work on the drug, to work on things that are difficult for Pompe patients. They are so very active in keeping up with what happens to each of us. They care! Having Pompe is a nightmare in itself. Yes, there are people that have it much worse, but this disease flat out sucks! It takes so much from you. It’s hard to deal with and it makes life more of a challenge. Having people that understand and have compassion is truly helpful in it all. Genzyme is not a drug company to me. Genzyme is a means for getting my treatment, my cheering team and my support system (one of them), but most of all Genzyme is a friend. Thank you Genzyme for being there and for holding this meet up that allowed me (and the others) to connect with each other as well as with out Genzyme team. It was appreciated so much. 

 

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