When Doctors Fail to Diagnose Rare Diseases: How to Pursue Medical Malpractice Claims

Receiving a rare disease diagnosis is often devastating, but what happens when doctors fail to recognize the signs altogether? Medical professionals have a responsibility to provide competent care, even when dealing with uncommon conditions. When doctors and medical staff fall short of this standard, it may constitute medical malpractice. 

At Denning Law Firm, LLC, we understand the challenges associated with misdiagnosis cases involving rare diseases. Our attorney brings decades of experience to medical malpractice claims to provide comprehensive legal representation. Our firm serves clients in Kansas City, Missouri, Kansas City, Kansas, and Overland Park, Kansas. We're here to help you understand your rights and pursue compensation for delayed diagnoses or misdiagnoses that have impacted your health and well-being. 

Understanding Rare Disease Misdiagnosis 

Rare diseases affect fewer than 200,000 Americans, but collectively, these conditions impact approximately 30 million people nationwide. The average patient with a rare disease waits 4.8 years to receive an accurate diagnosis, visiting multiple specialists and enduring countless tests along the way. This diagnostic odyssey often involves misdiagnoses that can worsen symptoms or delay appropriate treatment. Common examples of frequently misdiagnosed rare conditions include: 

• Ehlers-Danlos syndrome, often mistaken for fibromyalgia or hypermobility 

• Autoimmune conditions like lupus, which can mimic numerous other diseases 

• Rare cancers that present with seemingly unrelated symptoms 

• Genetic disorders that manifest differently across age groups 

• Endocrine disorders with subtle or varying presentations 

The challenge lies in the fact that many rare diseases present with symptoms that overlap with more common conditions. However, this doesn't absolve healthcare providers of their duty to consider all possibilities when standard treatments fail or symptoms persist. 

When Rare Disease Misdiagnosis Becomes Malpractice

Not every diagnostic error rises to the level of medical malpractice. To establish a valid claim, you must be able to prove four key elements:

• Duty of care: You must prove that the healthcare provider had a professional obligation to provide competent medical care. This relationship exists when you're an established patient receiving treatment from a licensed medical provider.

• Breach of duty: You must prove that the provider failed to meet the accepted standard of care that a reasonably competent physician would have provided under similar circumstances. In rare disease cases, this might involve failing to order appropriate tests, not referring to specialists, or dismissing symptoms without proper investigation. 

• Causation: You must prove that the breach of duty directly caused harm. This means the delayed or missed diagnosis led to worsened health outcomes, unnecessary treatments, or lost opportunities for effective intervention. 

• Damages: You must prove that you suffered actual harm as a result, whether physical, emotional, or financial. This could include disease progression, additional medical expenses, lost wages, or pain and suffering. 

Missouri Laws Governing Medical Malpractice Claims

Missouri has specific statutes that govern medical malpractice claims, including those involving the misdiagnosis of rare diseases. Under Missouri Revised Statutes Section 538.205, patients typically have two years from the date they discovered (or reasonably should have discovered) the injury to file a malpractice claim. However, there's an absolute limit of ten years from the date of the alleged malpractice, regardless of when the injury was discovered. 

Missouri also requires an affidavit of merit to be filed within 90 days of the defendant's answer. This affidavit must be signed by a qualified healthcare professional who can attest that the care provided fell below acceptable standards of care. For rare disease cases, finding a qualified physician familiar with the condition can be challenging, but it is necessary. 

The state follows a modified comparative fault system, meaning that if you're found partially at fault for your injuries (for example, by not following medical advice or failing to report symptoms), your compensation may be reduced proportionally. However, you can still recover damages as long as your fault doesn't exceed that of the defendant. 

Missouri also caps non-economic damages in medical malpractice cases at approximately $400,000, though this amount is adjusted annually for inflation. This cap applies to pain and suffering, emotional distress, and loss of enjoyment of life, but not to economic damages like medical bills and lost wages. 

Kansas Laws Governing Medical Malpractice Claims

Kansas operates under similar but distinct legal frameworks for medical malpractice claims. The statute of limitations in Kansas is two years from the date of discovery of the injury, but no more than four years from the date of the alleged malpractice. This shorter absolute deadline makes timing particularly important in Kansas cases. 

Kansas also requires expert testimony to establish the standard of care in malpractice cases. The expert must be qualified in the same or similar medical specialty as the defendant and must be familiar with the standard of care applicable at the time of the alleged malpractice. 

Under Kansas Statutes Section 60-3407, the state caps non-economic damages at $325,000, though this amount increases annually based on the consumer price index. Like Missouri, this cap doesn't apply to economic damages such as medical expenses and lost income. 

Kansas follows a comparative negligence system, meaning your compensation may be reduced if you contributed to your injury. However, you can still recover damages as long as your fault is less than that of the healthcare provider. 

One unique aspect of Kansas law is the Healthcare Provider Liability Fund, which provides additional coverage for significant malpractice awards. This can be particularly relevant in rare disease cases where long-term care needs may result in substantial damages. 

How You Can Build a Rare Disease Malpractice Case

Pursuing a medical malpractice claim for a misdiagnosis of a rare disease requires careful documentation and a thorough investigation. You can start by gathering all medical records related to your condition, including visits to primary care physicians, specialists, emergency rooms, and any diagnostic tests performed. 

Timeline documentation proves particularly valuable in these cases. Record when your symptoms first appeared, when you sought medical attention, what you were told by various healthcare providers, and how your condition progressed over time. This chronology helps establish patterns of missed opportunities for proper diagnosis. 

Second opinions and subsequent diagnoses also carry significant weight in rare disease malpractice cases. If another physician was able to correctly identify your condition relatively quickly after reviewing the same or similar information available to the original provider, it may indicate that the misdiagnosis was unreasonable. 

Medical literature and treatment guidelines can also support your case. If established protocols existed for recognizing or testing for your condition, and your healthcare provider failed to follow these guidelines, it strengthens your claim that the standard of care was breached. 

The Importance of Acting Quickly

Time limitations make prompt action essential in rare disease malpractice cases. Beyond the statute of limitations, evidence can become harder to obtain as time passes. Medical records may be destroyed, witnesses' memories fade, and healthcare providers may change practices or relocate. 

Additionally, continuing to see the same healthcare provider after discovering their error could complicate your case. While you should always prioritize your health and continue necessary medical care, documenting your decision-making process and any ongoing relationship with the provider helps protect your legal interests. 

Medical Malpractice Attorneys Serving Missouri and Kansas

If you believe you have been a victim of medical malpractice, contact us at Denning Law Firm, LLC as soon as possible. Medical malpractice cases are often complicated and require thorough investigation, extensive documentation, and access to medical experts who can analyze your case. Our attorneys can help you understand your rights, evaluate the validity of your claim, and deal with the legal process.

Our firm will also make sure your case complies with the statute of limitations to help protect your ability to pursue compensation. Located in Overland Park, Kansas, we serve clients throughout the Kansas City metropolitan area, including Kansas City, Missouri, and Kansas City, Kansas. Contact us today to schedule a consultation.