Annie – Mother
Laura – Daughter
Jane – Grandmother
Cause of blindness - Von Hippel-Lindau (VHL)
Annie and her daughter Laura both live with von Hippel Lindau (VHL), a genetic condition that causes tumor growth throughout the body. Annie’s mom Jane has cared for four generations of individuals with VHL. Their family’s strength and unity perseveres through their trials with VHL.
In the late 1980s Annie was 12 years old and her cousin passed away from pancreas and stomach tumors. This prompted her mother Jane to have all her children checked. MRIs found tumors in Annie’s eye and in her brother’s pituitary gland.
“At that time I was too young to think about it. I was just like, ‘okay, I’ll follow what I’m told. It’s no big deal…”
Annie grew up witnessing older relatives struggle with VHL, one of which was Annie’s paternal grandmother, she showed the family firsthand how life continues after vision loss. Jane remembers:
“When I met her she was totally blind. But she was fantastic. She sewed, she cooked, she cleaned the house.”
“She made it clear, even if you do go blind, you can live. You can go on with your life.”
Jane joked that for a time she was her mother-in-law’s seeing eye dog.
“I would take her to the grocery store. We lived in San Francisco, and I walked her down the hill to the store. She had a whole list in her mind. She was amazing, she even wore heels. And she never felt sorry for herself. We never heard her say, ‘oh woe is me’.”
Annie’s paternal grandmother passed away at 43, from a brain tumor, before VHL was discovered.
Jane wishes she had known her ex husband had VHL, but he didn’t even know. It hadn’t been discovered yet.
“I was 17 when I got married, I didn’t even take note of it. I wish I had been notified by his family, but they didn’t really know themselves.”
Though Jane wasn’t warned of her partner’s VHL, she still dedicated herself to caring for Annie and her brother. She accepted VHL as something that would be part of their family. She scheduled and tracked appointments, wrote notes, and kept contacts.
Pretty soon Jane was keeping a record of all the information of everyone in their family living with VHL. Jane has passed those records along to Annie, and in time Annie will pass them to Laura.
Not long after Annie was diagnosed, a doctor contacted Jane to ask if he could study their family. They were one of only two families in the area that had VHL. Jane and Annie’s family is one of the first to share their story living with VHL.
Their family helped the medical community better understand VHL. Annie’s older brother ended up in a medical book for the tumor on his pituitary gland.
While their VHL was researched, the medical care continued. Like all individuals with VHL, screening and treatment will continue for Annie through her entire life, which means she will have many doctors. Like when Annie’s previous doctor retired, she found another.
“When I got there he went all scientist on me… ‘Oh could I show these guys?’”
Annie’s VHL tumors were unique, and because of that her case was passed along between doctors. Eventually one of those doctor referred Annie to a retinal specialist.
They began lasering the vascular tumors in her eyes to prevent further vision loss, and for some time Annie’s vision remained stable.
Eventually Annie did experience significant vision loss in one eye, though not from VHL tumors in the eye.
Annie had kidney surgery, and when she woke up there was blood in one eye. Slowly, the blood disappeared, but over the course of a year Annie lost her color vision in that eye.
“I would close my other eye and then it’d be like looking through a fish tank.”
“One day I was watching TV, I looked through one eye and noticed all the color drained to gray.”
Annie waited a couple years hoping for it to recover on its own, but it never did. So Annie got it checked, and she was confirmed color-blind in that eye. She was prescribed reading glasses but there was no other treatment available.
Aside from the VHL and vision loss, Annie has lead a fulfilling life. She has always worked, she married, and she had Laura. Because VHL is hereditary, Annie had Laura checked for tumors when she turned 12.
“Big life events often trigger the growths, and Laura had just gone through puberty.”
Laura had known VHL ran in her family, and for a long time Laura didn’t worry about VHL affecting her. But tumors were found in Laura’s right eye, and they began laser treatment.
“I was young, I had thought that’s just how my family is, you know? I was balling, I was terrified of everything that had to do with the doctor.”
“I thought, ‘Gosh, it’s getting serious. I have to go to the hospital. I have to go under’…”
Thanks to the early detection, Laura has had no loss of vision. After the first round of laser treatment and check-ups, she felt more accustomed to it all.
“Eventually I was like, ‘okay, I’m good at this point.’ But it’s still scary.”
The tumors have given Laura pressure headaches, exacerbated by exercise and stress. She used to practice gymnastics, but the headaches forced Laura had to stop.
Annie also gets headaches when she is stressed and has to manager her stress carefully, especially at work. Otherwise the pressure builds.
Annie and Laura are mindful of their stress and manage themselves by stretching and working out to avoid headaches.
Witnessing their older relatives suffer from VHL, both Annie and Laura have serious fears of what the future could be. Annie has one fear that was dispelled early on.
“I used to be afraid that I’d never find a husband because of how jacked up I am.”
Annie did get married, and before they had Laura they discussed the chance of their kids having VHL. Though they agreed to have kids, raising Laura and handling the VHL was too much for Annie’s husband to handle. The pressure proved too much and they divorced. Thereafter Annie shouldered all the responsibilities of parenthood.
“I see other people go through stuff. We all go through stuff. It’s bad but it could be worse. So I don’t feel sorry for myself.”
On top of the vision loss, kidney complications and a divorce, Annie has had neurosurgery to remove tumors in her brain.
“Nothing has been as tough as this. I’ve learned I’m not invincible. It’s pretty devastating. But focusing on it too much is depressing, too.”
“Now I don’t worry as much for Laura, cause there will probably be even better technology.”
Jane put things in a healthy perspective:
“You can go around being depressed all the time, and you don’t even have to have a disease for that.”
Jane is proud of Annie’s courage: her bravery in dealing with her own and Annie’s VHL, her strength in raising Laura on her own, and her optimism through it all.
“Let’s have a good time, let’s play uno and barbecue! I just don’t like dwelling on it, so I don’t.”
Annie learned not to dwell from some of her relatives. Too often they let VHL dictate their conversation, their moods, and, ultimately, their lives. For Annie they were counterexamples; she knew she didn’t want to live with VHL like that.
“The bad thing is that they label themselves disabled, and they don’t keep active. They don’t have a hobby, and most of all they constantly talk about are their surgeries.”
Of course there are Annie’s grandma and aunt. Both set extraordinary examples of how to live with vision loss.
“My aunt taught me a lot. She knows the step counts to everywhere in her house, and she takes measurements by hand. She can even clean up after her dog.”
Annie has always been amazed at what her aunt can do and so she strives to set this example for her daughter. And what Jane has done for Annie, Annie now does for Laura.
“I go to her appointments, talk with her doctor, hold her hand and comfort her, letting her rest and being her nurse.”
All this support from Annie and Jane has made Laura’s life with VHL less daunting and much more doable. Laura is optimistic, and thanks to both Annie and Jane, she can pursue her dreams.
“I’m looking forward to Laura’s life. Her getting through school, her graduation. Her children. Just the experiences of life, and sharing them.”
Laura has wanted to work with animals for as long as she can remember. She has worked in the field for years, and she’s nearly done with becoming a veterinary technician.
“We’re starting surgeries of the big animals now. I’m not sure what I’ll specialize in… marine biology, or maybe exotics.”
Laura’s opportunity to live the life she wants, actively chasing her dreams, makes her grateful for both her mom and her grandma.
“I’m definitely blessed to have you guys. I look on the brighter side, and I feel good at the end of the day. We get to smile and enjoy life.”
To learn more about Annie and Laura's condition, continue here.