Advice From Mother of a Sickle Cell Warrior

Sickle Cell

Jan 6

In this program:

Sickle cell disease patients under pediatric care eventually transition to adult care. Sickle cell disease patient advocate and care partner Carla Lewis shares advice about staying engaged and ways that she helped her son transition to adult care.

Transcript

Ariqa Everett:

What is your most important piece of advice that you want to get to a family that doesn't know the next step in their journey?

Carla Lewis:

I would definitely tell another family that continue to research. When I say research, continue to be connected to the resources around you and continue to keep updated with the necessary treatments and have conversations that...continue that conversation with a physician. As a caregiver, even for myself, I'm going through transition, I didn’t know I’d be going through transition also, so I had to make steps because we don't have a particular transition program in our pediatric care, so just conversations with his doctor, “What can I do, to also help his transition stage?” And we started from age 16 when he was 16, started to have those conversations about, there will be some transitioning and you will be going to a doc here when you're not going to see...and just having conversations, this is the type of sickle cell who have...I need you to remember, this is your hemoglobin baseline. I gave him a whole book pretty much...that told him a little bit about his history with sickle cell, and we've had a question like, “When did you ever have a blood transfusion?” He's actually able to pinpoint that now, and different questions that came up with him, and I was pretty much him actually being able to now speak to the doctor when he goes into the clinic visits, so I started to have to be quiet.

So even with the ER visits, I’m like, “No you have to talk, you have to answer the questions.” And even though it’s hard for me, I know this is something I had to do. And I tried with providing his medications that he has to be able to take, he uses his phone for alarms in the phone, being able to use an app also to remind some of this medication. Now, I will not tell any untruth here. I go behind him, “Did you take that medication? I heard your alarm go off, and I didn’t see you go downstairs yet.” I am the back-up. I would definitely say I am the back-up, but I've seen him definitely progress, and his doctor had been speaking to him and him, he himself being able to ask the necessary questions to his doctors. “So why do I have to take this medication? Now, you know when they add something on, how long do I have to take it?” And I will never forget his last visit in the hospital, a nurse provided him the medication to take and he's like, “So what's that?” So you have to tell them before you give it to him now, so...

Yeah, it is like, “What's that? Well, I don't take that at night, I take that in the morning.” She was able to look back and say, “Oh, okay, so that means to be updated,” so just having important conversations and then being able to let go, I would definitely say as a mom, being able to help them transition. I will definitely say asking questions and keeping up communication with your doctor as a patient and as the caregiver keeping that relationship and definitely show up and speak up. You can come out to speak to your legislative representatives in the community, and when we are going to Capitol Hill, we have to ask some of the biggest sickle cell groups go on to Capitol Hill, meeting on Rare Disease Day, continue that. I've seen where it was only me and two other groups, now I can say that after coming back, spreading the word and have other advocates in the community talk about sickle, it's a large community that will be able to come out and share their story, it means a lot.

The information on Diverse Health Hub is provided for educational purposes only, and is in no way intended to diagnose, cure, or treat any medical or other condition. Always seek the expert advice of your healthcare team.