# Photos Not Taken: A Video Series on Living With Sickle Cell Disease

Aug 31, 2022 • 2 min read

_Blog post originally written by the AllStripes community team. AllStripes was acquired by PicnicHealth in 2023._

AllStripes is proud to host two videos by [the artist Bukky Adeyokunnu](https://bukkyade.photos/). Bukky’s work is lively and engaging, fierce and intimate, bold and vulnerable. The Baltimore –⁠based photographer has chronicled a wide range of subjects, including [sacred places](https://bukkyade.photos/prayer-space), [protests](https://bukkyade.photos/travel-documentary) and the process of [getting ready](https://bukkyade.photos/getting-ready), never failing to center humanity in every shot. As someone living with sickle cell anemia, Bukky has also turned their lens toward telling stories of living with the condition.

Sickle cell disease is a group of rare blood disorders that affect the red blood cells, which are important for moving oxygen throughout the body. Symptoms range and can include severe pain, infections, organ damage, and stroke. One of Bukky’s projects, called [The Warrior Series](https://bukkyade.photos/the-warrior-series), came into being after they spent time in the hospital. "I began researching documentaries and photo series about sickle cell," they explain. "Disappointed by what I found — sad stories, stories that narrow in on the pain, and stories that tell how there is no cure — I decided it was time for a different narrative. One of strength, hope, and joy." The results are transcendent, much like the two videos below, which tell Bukky’s individual story.

The first is an excerpt from a 2013 video Bukky titled “Future Photographs.”

The next, created exclusively for AllStripes, is a follow-up to the video above, a letter from 2022 Bukky to 2013 Bukky about many facets of life, including living with sickle cell. Watch to learn more about the advice Bukky has for the person they were, delivered with warmth and eloquence from the person they are now.

## We know that every person's story is unique and deserves to be heard.

Join our early breast cancer registry to be counted and share your story with research.

[Learn More](/content/breastcancer?utm_source=google&utm_medium=organic_search&utm_campaign=grace-ebc-treatment/index.html)

### Create a List

List the names of all the doctors, hospitals, and other facilities your loved one visits regularly, along with those they have visited in the past. Try to go back as far as you can, striving for at least the last 5-10 years, but do your best. Even if you can’t remember them all, having a strong baseline can help you quickly identify gaps in records.

#### Ensure You Have the Appropriate Legal Status

It is important to make sure that you are fully empowered to make decisions on behalf of your loved one with Alzheimer’s. Your relationship status with the patient may not be enough to legally give you access to your loved one's medical information. It is a good idea to talk to an expert about securing special legal status, such as Power of Attorney (POA), a legal document that allows an individual to name someone as their decision maker should they no longer be able to make decisions on their own.

#### Gather and Organize the Medical Records in One Place

It’s important to have all of your loved one’s medical records together in one spot. This makes it much easier for you and your loved one’s physicians to accurately map the patient’s medical journey and more easily share information between doctors. Fortunately, tools exist to make record management and access simple. A free resource like PicnicHealth helps you collect and organize all of this information. PicnicHealth’s intuitive timeline allows you to pinpoint data across the medical history, eliminating your need for keeping heavy binders filled with paper records or keeping track of multiple software portal logins.

#### Review the Medical Records to be an Informed Advocate

The better you understand your loved one's medical history, the better you can advocate on their behalf. Access and understanding of this information will help you to ask informed questions with physicians. Through regular communication backed by the data in the medical records, you can help your loved one’s care team develop a more successful care plan.

### Learn more about PicnicHealth’s commitment to the Alzheimer’s community and the Alzheimer’s Association

[Learn More](/content/alzheimers-association/index.html)

## Together, we can make a difference.

Learn more about PicnicHealth’s commitment to the Alzheimer’s community and the Alzheimer’s Association

### 1. Build a support network.

When you’re juggling appointment times and insurance claims, putting a robust support system together might not strike you as the most urgent task. Investing time to cultivate relationships with people can turn to in times of need will pay dividends. The next time you need a last-minute ride or just someone to listen, you won’t be on your own.

There are many condition-specific support groups and support groups for caregivers generally in person or online. In addition to the encouragement and empathy they provide, support groups can be a helpful source of tips, resources, and recommendations for navigating caregiving.

### 2. Stay organized.

The backbone of effective caregiving is organization. Keep medical information, appointment schedules, and medication lists in order. Use a planner or a digital service like PicnicHealth to stay on top of your responsibilities. This attention to detail can prevent future complications and reduce day-to-day stress.

### 3. Explore treatments and clinical trials.

We’ve seen incredible breakthroughs in treatment over the past couple of years, powered by patients and their caregivers participating in research. Stay in the loop about the latest in medical advancements and available resources that could benefit your loved one. Whether it’s a new therapy option or a community service that aids independence, being informed can make a world of difference in the quality of care you provide.

### 4. Make time for self-care.

It may seem self-centered to focus on self-care—but when you feel good, you can be a better caregiver. Whether it’s exercise, a mindfulness practice, a soak in the bath, or just time to rest when you need it, carve out those moments in the day when you can unwind, reset, and stay healthy mentally and physically. Think of it as building up your reserves of kindness, patience, and understanding—which can only benefit your loved one. No one can pour from an empty cup.

## Having trouble managing your loved one's medical records?

Easily manage all of your loved one's medical records and contribute to ongoing Alzheimer's research with PicnicHealth.

### LC-FAOD Odyssey: A Preliminary Analysis, presented at INFORM 2021

##### Data from real-world medical records:

(from 13 patients with LC-FAOD)

- **16 yrs old**: Median age at enrollment
- : 38% Female
- : 15 providers/patient
- : 7.5 years of data/patient

### Data from patient-reported outcome (PRO) survey

(from 13 patients with LC-FAOD)

## Learn more about contributing to IgAN research with PicnicHealth.

[Learn More](/content/igan/index.html)

## What to Expect

Before your video call:

- Book Your Assessment
- Visit your to-do list on your PicnicHealth Research Dashboard or click the scheduling link sent to your email. _Note:_ _Search for “New task for the ORBIT-CIDP Study" to find the video call scheduling link._
- Receive Confirmation
- Check your email for a confirmation with your scheduled video call time and instructions.

On the day of your video call:

- Click on Video Link
- Join your personal video call using the link sent by email, or text message, or find it on your [research dashboard](https://app.picnichealth.com/research).
- Meet your nurse
- A Registered Nurse (RN) will guide your virtual assessment, which will last about 30 minutes.
- Complete the Physical Activity Assessment (INCAT)
- The nurse will guide you through questions and, if needed, physical tasks to help researchers gain a deeper understanding of CIDP.
- Complete the Movement Assessment (Optional)
- If you participate, a nurse will guide you through three short recorded movement activities to complete as best you can:

### Tasks Include:

- **Chair Task**: While seated with your arms crossed over your chest and hands on opposite shoulders, you’ll be asked to stand up, remain standing for 20 seconds, and then sit back down.
- **Arm Movement Task**: While seated with your arms resting at your sides, you’ll be asked to raise both arms out to the sides until they meet above your head, then lower them back to your lap.
- **Finger Dexterity Task**: While seated, raise your right hand with fingers extended. Touch your thumb to each fingertip in order, then reverse. Repeat with your left hand. This will then be repeated with your left hand.

- **Earn Compensation**: Receive up to $55 for your participation:
  
  - $25 for completing the Physical Activity Assessment (INCAT).
  - $30 for the Optional Movement Assessment.

**Recording:** Your research assessment may be recorded to ensure accurate data collection. If you participate in the optional Movement Assessment, it will also be recorded. These recordings may capture your voice and responses, but identifiable information like your face, name, or background will be removed to protect your privacy.