Question:
Hi! I am 6 years old and I got diagnosed last year. I have been getting the infusions for 6 months. What do you like to do while you are getting your treatments?

Mandy's Answer:
Hey Maddie! I'm glad you asked because I think a lot of kids would like to have ideas on what to do during treatments. Here are some suggestions: * Read * Watch TV or a Movie * Play on the computer * Sleep * Talk on the phone * Talk to parents, doctors, or nurses * Eat a snack * If your IV is in your hand, ask the doctor to put it in the hand you don't write with so you can do homework, write, or do an art project There is a lot you can do during treatments, you just have to be creative. Good luck! Hope I helped!

Question:
Hey, I was just wondering if alot of your friends or co workers know you have gauchers? or if you keep it private? I haven't told many people I was wondering if you knew the most basic way of describing what it is to someone who wouldn't know? Thanks in advance! Hannah

Mandy's Answer:
Hi Hannah! Most of my close friends know about my disease. They don't know a lot about it, but they know that I have a disease and have to have an IV every other week. I mostly told them because my IVs can interfere with plans I have with them or whatever. Only my best friend and my boyfriend have actually seen my with an IV in - most of my other friends would get scared or weirded out. I do tell most of my friends because knowing I have Gauchers is part of knowing me. If people ask about it I tell them that it is a lysosomal storage disease where I don't produce an enzyme in my lysosomes to break down certain things which get stored in my cells. I tell them that I have to get an IV every other week, but other than that, I'm completely normal.

Question:
Hellow Mandy my name is hayley and i have gaughers type 3. what type do you have and how does it effect you? what treatment have you had or having? i was diagnosed in 1990 i had a spleen removle and chemotherapy and a bone marrow transplant my sister was my donar. i am now 19 and doing very well. how areyou doing.

Mandy's Answer:
Hi Hayley! It's good to hear from you. I have type 1 Gauchers Disease and I get an IV of 1400 units of Cerezyme every other week. As long as I get my IVs regularly, my disease doesn't really affect me. I am an active college student and I was even a cheerleader in high school. If I miss an infusion, I feel tired and have no energy, but that does not happen very often, and I lead a pretty normal life. I'm doing pretty well. I'm a junior in college (only a little over a year until I graduate!) majoring in elementary education. It's hard but I think that it is so much fun. I'm glad that you are doing well! Thanks so much for your question!

Question:
Hi Mandy its me Hayley thankyou four shareing your storry with me. i feel a bit guilty because you need the infusions ind i don't i have to take antibyotics to fite ifecections because of having no spleen. this meens that i have no natral ammunsystem. having type three i have many problems, a few years ago had to have an oporation on my back to corect a 90 decree curveture of my spine. my neweast problem is havind arthritis in my hipps and knes i now have to have physio and use a wheelchair. My family is very supportive towards me, my sister is most supportive to me being my donar as well as my beast freind.

Mandy's Answer:
Wow! It sounds like you have been through a lot! I'm glad you are doing better now and I wish you the best in the future. Like I said, I was happy to share my story with you! It's not very often that you find someone else with Gauchers Disease to share stories with. Good luck!

Question:
Thankyou Mandty for your comments and understanding. How do you cope with having gauchers? i find it having type three very demanding sometimes becaus of making frind and them not undestandinjg my life and difficulties. i also get ill alot because of my ammunsystem. how do cope with getting ill does it affect you the same way as it does me? and how does your fammily cope? mine are verry understanding and hopeful.

Mandy's Answer:
Hey Hayley! I'm glad to talk. For me, coping with Gauchers is not overly difficult, mainly because type one is the least debilitating of the three. With type one there is no bone or brain involvement if caught and treated early enough (I was diagnosed when I was four, so I have neither). I find that as long as I get my IVs every other week, I can lead a pretty normal life. People who don't know me (and even some that do) don't know I have a disease or anything wrong with me unless I tell them. I don't get ill very often unless it is a virus like a cold or the flu or something and I am around people that have it. My family has been very supportive, going to conferences with me, helping to schedule my IVs, and generally helping me to learn more about my disease.

Question:
Hellow Mandy how are you sorry i havent spoken to you for the last few days beenn busy with things. o have told my mum, dad and sister about you and they say that it is good for us to talk to eachother. i was thinkng about wether you know anybody in person who have gouchers because i kno quite a few girls who have type three we kno eachother through the greatolmand street hospital in londonj the group is called aurnty elan and we go out twice a year on activities. p.s hope you had a good easter from Hayley.

Mandy's Answer:
Hey Haley! My Easter was fine, I just hung out with my family. How was yours? Now it's me who's behind in responding. I've been really busy with school - I'm sure you know. I personally don't know very many people with Gauchers, and I don't think I've ever met anyone with type 2 or 3. I have met other patients at conferences and stuff, but I don't know anyone my age who lives near me that has it. It's okay though - e-mail provides lots of amazing opportunities. Your group sounds like a lot of fun! I'm really glad that you have the chance to interact with other girls who understand what you are going through. What kind of things do you do? Hope you're doing well and I hope to hear from you soon!

Question:
Hey Mandy! I'm 20 years old too and I am about to finish college studying Respiratory Therapy. I am a type 2 gaucher patient and my question for you is: While being on Cerezyme treatment do you get any weird side effects? If you do what do you do to get by it? I ask this because I get tired right after treatments and in between treatments too. I was just curious if its treatment related or if its just every college student phase. well hope to hear from you.

Mandy's Answer:
Hey Marie. Sorry It's been so long. You know college, and it's the end of the school year...well anyway, your question. I don't really get any side effects unless I don't get my medicine, in which case I feel tired and achey. I used to get headaches after my treatment when I was still on Ceredase, but since switching to Cerezyme I haven't really felt anything weird. I am tired a lot of the time, but I think it is because of the other medicines I am on, or, well, you know, college life! Thanks for your question! Hope to hear from you again!

Question:
Hello Mandy its Hayley. How are sorry i havent spoken to you in a long time my internet hasent been working. what have you been up to any think fun or interesting. My mum is taking me on holiday with my sister and her to children Maddie who is 2 and harvey who is8 months. My sister Emma was my donnar she carries gauchers so does my oldest brother. Do any of your fammily carry gouchers. i have to go noe i will speek to you soon.

Mandy's Answer:
Hey Hayley! It's good to hear from you again! How have you been? I'm pretty good - school is out for the summer - Yay! That's cool that your mom is taking you on a holiday. Where are you going? In my family, I only have one older brother, and when we got him tested, we found out that he is not even a carrier for Gauchers. Just me and my parents. That's cool that your sister Emma could be your donor. I bet you are grateful for her. Have fun on your holiday and I hope to hear from you soon!

Question:
Hi Mandy i am back from holiday now i went to Turkey it was fun and very hot the flight took onley 4 hours. how is your summer going how many weeks do you get, when i was at school i got 6 weeks have to go now gettin late almost 10:00 pm .

Mandy's Answer:
Hey Haley. Sorry it's taken so long, I just started my job (I'm a day camp counselor) and it's exhausting. My summer is going fine, I'm getting ready to leave for a mission trip tomorrow. Turkey sounds fun! What did you do there? I think that I get about 12 weeks for summer. Hope to hear from you soon!