I was able to attend the family conference sponsored by Global Genes in Seattle this weekend. What a great event. The whole conference was run perfectly from delicious food to great accomodations and thorough information. Dr. Ruth McDonald was a rock star and I could have listened to her speak for hours. I am so very thankful for her and so many doctors that are putting so much of their time and energy into the study of this disease. Even though I had been to a conference last year, I still learned so much and met knew people and gained so much from their stories. One of the things that hit me is how blessed we are with my son Ethan, his quick diagnosis and start on soliris has given him his kidney function back and a much easier time dealing with this. I almost feel guilty for this because of so many of you and your children that have gone thru so much more devastating treatments and outcomes while soliris was being developed. i can only truly thank you from the bottom of my heart- your hardships have paved the way for patients like my Ethan to get to recovery quicker. I cannot express the gratitude I have for you and I hope to pay it forward by doing all I can to continue to find a cure or even better treatment. Loves to you all.
A few key points that stood out to me even though they may be so simple or obvious to the rest of you. I often panic when one of my other children complain of a stomach ache- that was our onset. I stress over not wanting to rush them in and worry until it passes. This question was brought up and an amazing mom had a great answer for how she handles it: taking what you know about ahus out of the equation, would i rush my child to the doctor? this simple thought process relieved so much worry for me and made sense. i know it will always be in the back of my head and i'll keep a closer eye on them, but my girls won't be dragged into the clinic with every tummy ache.
also there was a great social worker Dr. Maya Doyle that was fantastic in everything she said. she talked a lot of starting them on the path of independence (depending on their age). Talking to her after I mentioned that as Ethan is almost to taking all meds by a pill or tablet (almost no more compounding!!) maybe we could have him fill his pill box each sunday night. she very much liked that idea and then advised to have him take one set by himself (in charge of taking them), slowly adding to his daily routine. she also mentioned to make sure that the pills are in a public space like the kitchen- so that they have their independence to take them, but i can keep an eye out to make sure they were taken. i found this advice helpful.
another thing that stood out to me was the emotional struggles each patient faces. especially the teens- it has got to be so hard to be "normal" and fit in and not have to worry about how this would affect your future. these teens are pretty tough but we all have breaking points. i'd like to think about how we can help them- maybe an older patient assigned to them as a mentor, maybe a way to get these teens (and kids and adults) together for a day of fun and no worries- to connect and bond. in not so many years ethan will be a teenager (yikes!) and i know that he will face struggles.
i could hang out with patients and caregivers all day- so much to learn, to share and to move forward. i am very excited about iowa and any other conference i can manage to get to. if you can find a way to one of them- go! it will be an amazing experience for you!